Maxwell Charles Munakata
A short gut, a long road, a full life.
Max's First Year,
Max's Third Year
Mon May 28, 2007
ONE has never seemed so monumental to us. Max is 1 year old. One
year filled with more despair, fear, hope, acceptance, and joy than we
could have ever imagined. Like regular parents, I suppose. And
filled with numbers. With a nod to Harper's Index (and following
- 2.5 blissed out days before we knew anything was seriously wrong.
I had heard the advice about napping when your baby naps, but I
couldn't take my eyes off him. I slept when our hospital room in the
newborn wing was too dark to see him.
- 230,000 Google hits for Hirschsprung's. Randy searched while we
waited for Max to poop and wondered about his orange spit-up.
- 1 in 5,000. Why we were told not to worry about Hirschsprung's.
- 1 in 5,000,000 -- the incidence rate of Max's condition, extreme
long-segment Hirschsprung's, leading to a lack of ganglion cells in
most of the small intestine and all of the large intestine.
- 1 neonatologist who told us we would be "screwed" if Max had
Hirschsprung's. Everyone was convinced that he didn't have it. That
neonatologist was the one who later had to break the news to us.
- 130 days before we could bring Max home.
- 29, 36, and 65 days spent waiting while living respectively, at
Saint Christopher House near the hospital, our temporary apartment
in Boulder, and home.
- 28 days before we could bring ourselves to remove Max's carseat from
our car -- and even then, only out of necessity to fit passengers.
- 4 major intestinal surgeries.
- 1 liver biopsy. By that point, we thought of it as "just" a
- 76 days living in Boston.
- 525 statements from our insurance company.
- 5 hospitals.
- 3-4 lifetimes ago that all of that feels.
- 136 days living at home as a family.
- 5 days between when Max first smiled at me and when he smiled at
Nurse Becky. Nurse Becky's came first. She had arguably done more
for him at that point.
- 2 agonizing days after Max first smiled at me before he smiled at
- 1 agonizing day after Max first offered Randy a nystatin syringe
before he offered one to me.
- 1 line infection (that entered Max's blood stream) during his 4+
months in the hospital.
- 2 line infections in his first 3 months at home (garnering us 14
more days in the hospital).
- 0 line infections in the 4+ months since connecting with the
network of short gut parents in Boston.
- 2400 syringes employed in our routine use of Max's central line
since he first came home from the hospital.
- 33 days after Max's g-tube was inserted before Randy and I felt
ready to try caring for it.
- 45 minutes to get through our first bag change ordeals.
- 3 bag changes during our 1-day record high (a record low).
- 5 days that we currently enjoy between planned bag changes.
- 10 minutes for these bag changes.
- 0 poopy diapers.
- 1 bathroom for 6 people in our apartment in Jamaica Plain.
- All of them -- the number of questions on the back of a driver's
license renewal form that Christian's mom was told to just check No
to. One of the questions asked whether she wanted to be an organ
- 1 DMV worker who got a serious talking-to.
- 5 months that we kept a packed suitcase in our car in case we got
the transplant call.
- 2000+ pumpings of milk.
- $2 per day to rent a hospital grade pump
- $120 to fed-ex my frozen milk home from Boston.
- 1.5 ounces of milk that we discovered Max could get during his
- 150 ounces minimum donation for the hospital milk bank.
- 2210 ounces (17 gallons) of my milk donated.
- $3.50 per ounce -- price for recipients of donor breast milk.
This covers the milk bank's costs of pasteurizing, testing, etc. None
of us are profiting. But with increasing demand, breast milk is being
sold on ebay and via a for-profit online company.
- 45 minutes by car to Children's Denver from our home.
- 5 minutes from boarding to take-off in a LearJet.
- 15 minutes for security to process our pumps for a commercial flight.
- 45 minutes by bus from our apartment to Children's Boston.
- 45 minutes on foot from our apartment to Children's Boston.
- 1 naysayer about Paris who stepped forward to admit it.
- 1 gasp issued in response to his suggestion that Randy and I go
to Paris without Max.
- $5 of earnings to-date for Max, for 30 minutes of work as a
research subject in my lab.
- 4 hours of volunteer work, posing as a US
News & World Report centerfold.
- 3 Children's Denver fundraising events that we had to withdraw
from while in Boston.
- 34 babies on Omegaven through Boston before Max.
- 49 babies on Omegaven through Boston to-date.
- 1 US hospital administering Omegaven when Max started.
- 21 US hospitals adminstering Omegaven now, by Boston's best guess.
- 35 percent of people in our experience who first pronounce
Omegaven, omeGAHven. (It's oMEHgaven.)
- 95 percent of people in our experience who first pronounce Puder,
Pooder. (It's Pyuder.)
- 1 family who thinks a slimmed-down Alfred Molina could play Dr. Puder in the movie.
- 1 parent who prefers Billy Zane.
- 1 known insider probe to Oprah about the Omegaven story.
- 4,549 emails about Max.
- 6 emails received this week saying how great Max looks in his
- 9 people who have shared their knowledge on
the short gut wiki that Randy started.
- 2,615 accesses of the wiki main page.
- 1,343 accesses of the wiki Omegaven page.
- 149 accesses of the wiki transplant page.
- 3 hours after midnight that fall within Randy's most productive
- 10 students in our grad seminar who crammed into our videoskype
screen Wednesday and Friday afternoons.
- 36 members of our labs who emailed, called, skyped, and biked to
our house at all hours to keep the research running almost disturbingly
smoothly in our absence.
- 2 haircuts.
- 8 teeth.
- 2 known allergies.
- 1 letter by Nicole Speer published in the New York Times last week,
defending the vegan diet during pregnancy and infancy.
- 12 hours per night that Max generally sleeps, ever since we
discovered "Healthy Sleep Habits, Happy Child" 6 months ago.
- 10 minutes to take a shower. I still can't fathom why it's
such a struggle to fit one in.
- 1 time that I kicked at the air. That I admitted to.
- 2 times that I awoke from a postpartum haze to feel like myself
again -- once at 5 months, once at 11 months. I'm looking forward to
the next one.
- 1 year that Randy's grad student gave us before we needed to
become fun people again.
Wed May 30, 2007
We've never been so excited about missing data points. Max is doing
well enough that Nurse Gail doesn't come to the house today to draw
his blood. It's the first week of his life without lab work. Not a
bad way to kick off his second year.
Thu May 31, 2007
I get back on the horse today. Friends had warned us that
snowboarding would never be the same, that having a baby would make us
tentative, which dooms you on the slopes. We knew we'd miss one
season while I was pregnant. (Randy empathetically sat it out with
me.) Then we missed last season. But today I get to ride my
longboard in to school for the first time since Max was little more
than a hope. I'm running late for my lab meeting, and skateboarding
is 10 minutes faster than walking. And I prefer being active over
driving, which actually takes about the same amount of time. But
mainly, it's fun. Never mind the fact that Randy has been
longboarding to school since we returned from Boston. I think the one
year deadline from his student was a good one.
We'll get back on the slopes too. And with his pumps, Max could be
the one snowboarder with something really important in his
Sat June 2, 2007
Many friends wished Max a less eventful second year. It's a nice
thing to wish for.
Max is lying in a pool of blood when I go to his crib this morning.
There's blood splattered on his face and pajamas, and a terrifying
bright red circle spreading on his sheet.
He is talking and smiling. That helps. It helps a lot.
I wake Randy. I find the point in Max's tubing where the blood is
coming from, and I clamp the tubing above this point, closer to Max.
Randy staggers in (having been asleep for only a few hours), and we
find the problem: The tubing that carries the Omegaven to Max's
broviac has a small port, which has somehow become unplugged. So
instead of Omegaven being pumped to Max's heart, it was dripping onto
his sheet. Just past this open port, the Omegaven tubing connects to
a splitter on Max's broviac. The other side of this splitter connects
to Max's TPN tubing. The TPN was also exiting the open port on the
Omegaven tubing, the path of least resistance, followed by blood
reversing out the broviac. I detach the Omegaven tubing from the
splitter, and the TPN resumes its normal flow toward Max's heart.
The circle of blood is about a foot in diameter, and the bright red
mess soaks through the sheet to stain the protector underneath. But
it's probably not as bad as it looks. A circle like this could result
from a bunch of Omegaven and TPN mixed with just a bit of blood --
maybe less than a weekly lab draw's worth.
The on-call doctor at Children's Denver assures me that I've done
everything I can, and that the risk of infection is low, because fluid
was exiting from the port and likely preventing anything from
entering. The call doesn't exactly reassure me though. For that, I
call Austin's mom. She knows what it's like to come upon this jarring
scene, from when Austin once had a defective broviac connection.
We will try to better secure the port plug, which Max most likely bit
off as part of his recent surge in mischieviousness. Or we will
try to get tubing without a port. We will keep a close watch for
signs of infection.
Max treats me like his hero. He had been taunting me up until today
by producing every other sound -- da, ba, wa, puh, fuh, vuh, thuh,
guh. But today, he can't stop talking about mama mama mama. To Randy
when he staggers into the room. To his mobile while we change his
clothes and sheets. To his truck as he plays on the floor after
everything is cleaned up. As soon as he wakes from his nap. Mama
mama. Yes Max, I'm here.
Mon June 4, 2007
Max is still giving me the hero treatment. Despite all those months
of Dada dada, Randy is already urging him to move on from his
insistent Mama mamas -- to "Nana," who is visiting.
Max is doing just fine after his smiley bloody Saturday morning. Much
better than me, actually. I am trying to stay on the horse. We
submit Max's passport application this afternoon. Step one for
Tue June 5, 2007
Ellie's family calls it the short gut cha-cha: 2 steps forward, 1
The results from Max's allergy blood test come back today. I have
been preparing to be grateful for whatever foods he is not allergic
to, no matter how limited. That would be tuna and shrimp. That's it.
He is allergic to milk, nuts, eggs (whites and yolks), peas, beans,
wheat, soy, and corn.
We're waiting to hear back from his doctors about exactly what this
means. One unsettling possibility is that a weakened intestine can
allow foods to seep through the lining. The immune system attacks
these apparent invaders, leading to the development of an allergic
reaction to those foods. Nursing may have exposed Max to all of the
foods that he is now allergic to.
I apologize to Max for possibly doing such horrible things to him when
I thought we were doing wonderful things. He just looks up at me and
laughs. He has been laughing a lot lately.
I am momentarily the strong one in dealing with the news. Things are
always the hardest when we first get new information, but we will
figure out how to deal with this. Max can outgrow his allergies.
We're doing the best we can with the information we have. Even if the
allergies were triggered by nursing, they might still be worth the
benefits of breastmilk given Max's condition -- in providing growth
factor for the intestine, establishing a good probiotic environment to
reduce bacterial overgrowth, and confering immunological benefits.
But we quickly fall into our respective roles. Randy carries on with
the mantras, while I revert to a raw vulnerability and sadness that I
haven't felt since Max's first weeks. It's hard to summon the energy
to consolidate and freeze my milk at day's end. Parents dance the
short gut cha-cha too.
Wed June 6, 2007
I can't believe we waited this long. And that it took Max's bloody
sheets to put us over threshold. But we had no idea how much fun a
baby video monitor could be. Until tonight, when we set one up as we
put Max to bed, and get our first glimpse of what happens after we
leave the room.
It turns out that he reads and does calisthenics. He flips through
his soft book of sign language, a gift from our colleague Martha
Alibali, filled with photos of her daughter Mariana signing essential
terms -- "sleep," "more," "I love you." He rolls onto his hands and
knees, returns to his back, kicks his legs, and waves his arms. He
pulls and chews on his tubes. His tubes! (But they are better
protected now, covered with a cloth sleeve from Ellie's family to
Christian's, handed down to Max when Christian had his broviac removed
in Boston. And his tube ports are taped closed.) He resumes reading
and working out for a good half hour. Our audio monitor would have
suggested he was pretty much out.
I am transfixed, even after Max falls asleep. I stop watching only
when our power goes out due to howling 90 mph winds. (Max's pumps
have backup batteries, but our monitor apparently doesn't yet.) I am
reminded of Jan
and Dick's stories about endless footage of their firstborn
sitting in a swing. They too were transfixed, long after family
members gave up wondering if anything was ever going to happen in
their videos. I look forward to eliciting that reaction more and more
as the years go by. That's it? Max is counting? Helping Dada cook?
Snowboarding? Yep, that's it. Isn't it fascinating?
Thu June 7, 2007
When we told OT Judy on Tuesday about all of Max's allergies, she
asked what the good news was.
As of today, Max has lived at home longer than he has lived in
hospitals. He commemorates the occasion with a beautiful set of labs.
His bilirubin falls below Boston's threshold for switching to monthly
tests. We have been dreaming of this moment since the frigid day
we arrived in Boston, when we didn't know if it was too late for Max
to ever reach this milestone.
Max does have to leave the comforts of home for the discomforts of yet
another medical facility this morning, but just to receive his regular
1-year vaccines. The nurse who delivers the succession of shots
marvels at how much better Max is looking since his 6-month visit.
The good news is very good.
Fri June 8, 2007
Three days is an eternity for ruminating and second-guessing,
particularly in the face of a letter enumerating Max's allergies, with
the daunting 1-line instruction to cut all those foods from his diet
and mine. But today we sit down with Max's allergist, and get
welcome information and reassurance:
The allergist emphasizes the range of foods that are still allowable,
and implores me to eat. I feel better positioned to.
- The pea allergy is odd, but otherwise the allergist sees kids like
this all the time. He estimates that 95% eventually outgrow their
- Allergies are graded rather than all-or-nothing. (This idea is a
focus of my cognitive work, but I hadn't appreciated its
gastrointestinal relevance!) Max is extremely allergic to milk, egg
whites, and peas, and highly allergic to peanuts and almonds. He and
I can easily avoid these in our diets -- peas are the only food that
hadn't already been cut. He is reasonably allergic to wheat and egg
yolk, somewhat allergic to corn, and weakly allergic to beans. We can
limit those in our diets without having to be militant about it.
We'll also limit consumption of soy and fish since these are common
allergens for kids, even though Max currently shows only weak
allergies to soy and no allergies to fish.
- Oils are less allergenic than proteins. Soy sauce will be less
restricted than tofu. Fish oil (Omegaven!) will not be restricted
- The consequences of Max's allergies seem manageable -- they
mostly make him itchy. Even in the extreme case of him eating peas,
his face can get a bit rashy and puffy, but this reaction occurs only
sporadically and is easily controlled with benadryl. If Max ever
springs anything more exciting on us, we'll be armed with epinephrine
needles (a la Pulp Fiction, except injected into the thigh rather than
- The causes of allergies are yet another gray area -- gray
enough not to kick ourselves too much over "could have's" and "should
have's." Okay, we could have postponed solid foods due to allergy
risks in short gut kids, as Austin's mom was warned repeatedly by
Pittsburgh. I should have cut cow's milk from my diet, as Ellie's mom
was instructed by Yale. (I was instead encouraged by a GI doc to make
sure I drank enough milk -- "milk in, milk out.") We could have
tracked down general guidelines for kids at risk of allergies,
including cutting eggs from my diet. But the allergist suggests it
may not have made much difference -- certain kids may just need to
avoid certain foods for certain periods of time. It's hard to know
exactly why. Food allergies are more common early in life, because
the intestinal lining is more permeable, and the stomach is less
effective in breaking down the proteins that trigger allergic
reactions. This is true for all kids, not just short gut kids. One
additional factor in Max's mix is that his medication for acid reflux
interferes with the breakdown of proteins in the stomach. It also
interferes with the stomach's natural checks on bacterial overgrowth,
so we cut this medication after Max's recent episode. He hasn't
seemed to miss it.
- No one seems to think that nursing Max was a mistake.
Sat June 9, 2007
Step two for Paris is Pittsburgh. And Cleveland. We head to both
places next week on our first family flights just for fun -- no
biopsies, no blood draws, no broviac replacement surgeries. At least
none that are planned.
The trip won't include the thing we fear most about Paris: jetlag. We
have heard that Max may adjust to that 8 hour time difference faster
than us, but I also worry about our alertness for handling his cares.
Our practice trip will include home turf advantage with jiji and baba
in Brecksville, a suburb of Cleveland where I spent 9 of my formative
years (and which we haven't seen in 10 years -- family reunions moved
to Colorado with us). But the trip should still provide a reasonable
reality check for Paris.
In Pittsburgh, Max will attempt his first wedding. We would have more
confidence about his prospects for not protesting, except that the
groom is the person Max fears most -- despite his thoughtful visits to
see Max in Pittsburgh, Boulder, and Boston. Hopefully Anna will help
to soften (or at least divert) Ken's scariness.
Sun June 10, 2007
When Max wakes from a nap and hears footsteps approaching his room,
the babycam reveals a smile of anticipation spreading across his face.
These days, the footsteps are equally likely to be mine, Randy's, or
It was almost too easy getting here. Randy posted a nanny ad a couple
weeks after we returned from Boston. We received dozens of
applications, interviewed our top 3 candidates, and agreed immediately
on Kate. She accepted just as quickly. The whole search process was
over in little more than a week. Nurse Barb and NP Kristin saw us
through the ensuing month, while Kate trained someone to take over for
her as a lead daycare teacher. She started with us the day Max turned
For 7 hours a day, 4 days a week, Max is happy hanging out with Kate
-- swinging at the park, listening to her sing, throwing down the toys
she presents for his consideration. He is completely at ease in her
arms, bringing us peace of mind, and our own smiles of anticipation
each time we reunite with him.
Mon June 11, 2007
There's nothing like the hospital to make you appreciate home.
Max wakes with an elevated temperature. We track it all morning,
watching it float around the hospital check-in threshold of 100.4. We
blast the swamp cooler, hoping that it's just the warmth the house has
been storing up over the last couple 80+ degree days. But we mentally
start packing for another stay at the inn -- the usual diaper bag,
laptops, and pajamas, plus the new challenge of Max-friendly food to
sustain me through an indefinite stay. Then his temperature comes
down. And stays down. Our relief lets us take in just how cute he
is, sporting haircut #3 from yesterday, and giggling himself silly at
me putting things on my head. The mere threat of the hospital brings
into sharp focus how luxurious it is to work in our family room, to
cook in our kitchen, to sleep in our bed.
Tue June 12, 2007
Breaking my foot in grad school got me in the best shape I've ever
been in. I sustained the stress fracture while training for a
marathon, and took up swimming and weight-training so the handicap
wouldn't reduce me to inactivity.
Our dietary handicaps may also get us in the best shape yet, from
nutrition and culinary standpoints. We will consult with a dietician
to ensure that Max and I get the nutrition we need despite our
restricted diets. And I'm eagerly trying my hand at new concoctions.
The last 3 nights in a row, I've cooked something that tasted good --
a fact that would shock anyone I've cooked for. Pork over
mint/cilantro/lime quinoa, blueberry maple chicken sausage over rice
pasta with farmer's market tomatoes and mushrooms, and grilled
lime-marinated chicken over the quinoa leftovers.
I never did end up running a marathon. And I have rarely cooked a
meal that Randy hasn't needed to salvage. But Max-fans with similar
allergies (or with kids who have similar allergies) have provided a
wealth of helpful suggestions. Plus we're in Boulder, where Nurse
Barb feels like she's in the minority as someone who eats eggs and
drinks milk. And I've never had a motivation quite like Max.
Wed June 13, 2007
It eventually dawns on me, on two separate occasions this afternoon,
why a knot is forming in my throat.
The first time is as I walk from school to the dentist. Half the
route is the path I would walk home when I was pregnant, to the family
housing apartment that we rented during our renovation. I've only
ever walked this route with Max on board. These places still have a
way of overwhelming me, but now with more nostalgia than sorrow.
The second time is when I realize what happened when Max last had
slightly elevated temperatures off and on, in January. He had a
staph infection that landed us in the hospital for 9 days, and gave us
half a day to prepare for our move to Boston. His temperature is
briefly elevated again today. He is scheduled for blood work anyway
(for further allergy testing), so we add a test to see if he has an
infection. We'll wait for word on those cultures over the next couple
days. We hope Max isn't starting a habit of warming up for travel
with stays at the inn.
Thu June 14, 2007
We're back at the inn.
When Randy and Nanny Kate take Max to the hospital for his regular
checkup this afternoon, his temperature is up to 100.4. So he gets
checked in, has fresh labs drawn, and starts broad spectrum
Aside from his temperature, all of his measures look great. His
regular checkup shows that he is growing nicely on all dimensions --
probably due to increases last week in his TPN rate and time (20
hrs/day instead of 18), and in his absorption of food (which seems to
be benefiting from the addition of prebiotics, food for his good gut
bacteria, which Randy researched extensively and pushed for). His
general labs (bilirubin etc.) are stunning. His tests to check for an
infection look fine -- his cultures are negative so far, his CRP is a
low .5. Even his temperature periodically comes down on its own.
Max certainly doesn't think anything is wrong. By the time I pick up
our car from servicing, pack for an indefinite stay, and get down to
the hospital, Max has been off of his TPN, g-tube feeds, and nursing
for several hours longer than usual. I fret about how horrible this
must be for him, while he happily rolls around and basks in everyone
oohing and aahing over how he is a brand new boy. (People in this
in-patient wing haven't seen Max since just before we went to
Our stay at the inn gives us an excuse to call Dr. Puder, to check on
possible incompatibilities between Omegaven and antibiotics (they are
unknown, so we stop one when we start the other). We learn that he
recently won a surgeon-of-the-year award. It's presumably for saving
so many lives, and for pioneering the research behind the treatment for
kids like Max
(click here to support it). His award probably doesn't include
the fact that he also happens to be the kind of doctor who makes
patients (and even ex-patients!) comfortable pestering him with
questions at marginally respectable hours.
We'll continue to wait on Max's cultures. We may yet make our flights
and wedding this weekend.
Fri June 15, 2007
Max is 3 for 3. We realized yesterday that he pulled this hospital
antibiotic craziness not only right before Boston in January and
Cleveland now, but also just before flying to Pittsburgh for his
transplant consult last August. That first episode was the least
memorable, because Max had been in the hospital all along. The
current episode seems the least serious. Max's temperature is running
mostly normal to occasionally slightly elevated. His cultures
continue to test negative, and all of his measures argue against
infection. He may just have a regular kid virus, though he shows no
outward signs of one, and the docs do not view him as contagious. His
antibiotics get discontinued and we get discharged this afternoon.
Randy thinks we should just reserve a nice corner room at the hospital
for the week before Paris.
Sat June 16, 2007
Notes for Paris so far:
1) Pack the nystatin somewhere memorable, so that it is easy to find
upon arrival. The sticky, syrupy, nystatin.
2) Cap it tightly.
That's it. The start of our trip, which involves the pilot
intervening on our behalf, makes us expect a much longer list. The
seat next to Randy is empty, so the flight attendant readily agrees to
retrieve Max's carseat for it from the gate check-in. But a gate
agent blocks him, insisting that the "revenue-generating" seat must be
kept empty for the flight. The flight attendant notifies the pilot,
who overrules the gate agent and retrieves the seat himself. Randy
and I join the chorus of sighs of relief issuing forth from
surrounding rows. Max rewards everyone by promptly falling asleep,
snoozing through take-off and the first hour of the flight, then
exploring the endless entertainment afforded by an adjustable tray
table (up, down! up, down!), overhead light and fan (on, off! on,
In Brecksville, Max rolls around and around on my childhood bedspread,
pulls little fish from a stuffed pelican (a home ec project of Auntie
Junko's), and says bababa. He's asleep by in his portacrib by
Sun June 17, 2007
Jiji has always insisted that Father's Day is a separate occasion from
his birthday, worthy of its own celebration -- even when the occasions
fall on the same day, like today. So it is convenient that I've been
thinking all along that Father's Day is next week. That's when Randy
will get his celebration, in any case.
Now we'll also know June 17th as Ken and Anna's anniversary. Ken
turns out to be much less scary when he's singing a love song. Or
maybe it's the whopping 4 naps (3 in Brecksville, 1 en route to
Pittsburgh) that Max takes in preparation for his first wedding.
Whatever the reason, he issues only minor protests during the
ceremony. Then the real fun begins.
Max meets the girl of his dreams. Or at least the girl he thinks
about just before drifting off (having looked at her book
of signs up until the last possible moment), and as soon as he
wakes (picking the book up off of his torso to flip through yet
again). And 3-year-old Mariana has spent countless hours of her own
looking at Max's blog photos. They seem at least as obsessed with one
another in person.
Max gets to sit with us at the cool table -- aka the sailing table,
aka the kids' table. (Mariana keeps sneaking over to try to join us.)
Mike and Ray's 2-year-old shows only a passing interest in Max, but
her feelings may be complicated by the fact that Max was melting in
Mike's arms for most of the preceding cocktail hour. Anne and Guy's
girls are turning old enough (9 and 6 years) for their parents to
think about organizing sailing trips again. The thought of 4 families
swaying together in a closet-sized space for a week makes Paris feel
all the more manageable.
Max gets to dance. He has always loved swinging around with Randy and
me as we sing random songs. But he has never had accompaniment like
this rocking band, or a lead to follow like beautiful bride Anna's.
She declares Max her best dance partner of the night.
We worry as we load Max into the car that we have overstimulated him
for too many hours, too close to bedtime. (The reception also
involved meeting many other Max-fans from our grad school era, as well
as a penguin brought out for the occasion.) But Max is asleep within
seconds. He has seen that the stuff of dreams can become reality.
Mon June 18, 2007
We expected this trip to provide practice -- not pressure -- for
Austin's family lives outside of
Pittsburgh. This time, instead of a rushed 10 minutes together at the
hospital like we had in Boston, we are treated to a downright
leisurely evening in their home. Time for a bag change for each boy,
so the parents can swap techniques (Austin gets more drying before
skin protectant is applied, Max gets more form-fitting paste). Time
for Max to discover that there are actually toys not included in his
collection. Time to feast, on a delicious assortment of grilled,
Max-friendly dishes. And time to talk -- about the darkness leading
up to Diagnosis Day, and about how much better every day has been
A neighbor drops by -- the mom of Andrew, a 20-month-old with short
gut. She is originally from the Czech Republic, where she held the
babies of all her friends. She hopes to make a return visit so that
her friends can finally hold Andrew. But she wants to see how our
Paris trip turns out first. It's a welcome pressure.
None of us ever intended to become part of this extended short gut
family. Now we're sure glad it's here.
Wed June 20, 2007
My 7th grade boyfriend, to the extent that I had one, was on the
chunky side. But when I tried to google him years later, all that
came up were race times. Pages and pages of race times. Tim actually
ran his marathons (unlike me), and came to bear a passing resemblance
to Brett Favre. How things change.
Fancy new neighborhoods are popping up all over Brecksville. One of
them replaced the wooded streams behind our house where I caught
salamanders as a kid. Another is where Tim lives, having recently
made his way back to Brecksville. Max is more impressed with Tim's
daughter, who also just turned 1 and worships ceiling fans with the
same reverence. Ella chases after her brother Zach and whispers
"cake," while we catch up on the old and the new.
Thu June 21, 2007
People anticipate and remember enjoying vacations more than they
actually enjoy them. But it is hard to imagine that we'll look
back on this visit with baba and jiji with even more fondness than we
feel in the moment. Watching Max proudly engage in his first real
maneuverings (using a unique combination of pre-crawling -- backward
and forward -- and rolling) to reach toys offered by jiji and baba.
Skipping stones at Chippewa Creek in the shady Metroparks.
Overhearing baba and jiji articulating their names for Max's
Our rosy view of vacationing stems in part from forgetting the more
tedious parts. We probably won't reminisce about how baba and jiji
waited in the car with sleeping Max, while Randy and I lost track of
time at the home of friends John and Barb on our way back from
Austin's. And I'll try not to reminisce about jiji's unfavorable
assessment of how I seem to be coping relative to other short gut
Even before fully ripening though, this vacation has provided just
what we wanted.
Fri June 22, 2007
When we land in Denver, Randy declares that although our fellow
passengers suffered, Max was not the worst baby ever endured on a
plane. Our evening flight falls in his fussiest window. He has taken
only one brief nap so far, and has to be woken to board the plane
minutes after starting his second nap. He refuses to sleep on Randy
or me. A separate seat has been offered for him on every other flight
(even without pilot intervention), probably thanks in part to Akira --
who as a member of the bajillion-miles club, can actually bestow
frequent flier status on others. But today's flight is completely
full. Full of passengers listening to Max.
With everything we've been through, Randy and I have often thought
about our friend Barb's "bad marathon." She has run many good races,
but for this one she experienced severe cramping that forced her to
stop several times. She managed to complete the marathon somehow, and
came to value the experience for allowing her to worry less, knowing
that she could make it through bad stuff when it arose. Seeing Max
through each major surgery was a bad marathon. Finding him in his
bloody crib was another. This flight is our bad marathon of travel.
At 2.5 hours though, I suppose it's a sprint relative to getting to
Paris. But we see that we can make it through.
Sun June 24, 2007
When Toshio sends out invitations to his birthday party each year, his
friends ask the same question: Will Randy be there?
Everyone knew Randy would make a great father. He never fails to be
the feature attraction in a roomful of kids. At one party, Toshio
repeatedly proclaimed to him, "You're my uncle" -- as if to clarify
to the hordes of squealing children climbing on Randy and thwacking
him with balloons that he was not actually the hired party clown.
Mike Bridges, Max's best friend at the wedding, noted on a sailing
trip how the things you love most about someone can also be the things
that drive you crazy. Watching Randy with Max has helped me to love
not just his party clown skills, but also some things that used to
drive me crazy (or really, that just plain baffled me).
Randy isn't a planner. When I talk about the future, he gets a
faraway look in his eyes like I am trying to engage him in a dialog
about unicorns. We used to think of this difference in terms of me
being strategic, Randy not. But a friend pointed out that the people
who plan are generally the ones who need to. The people who don't
plan aren't simply missing a skill -- they usually have the
complementary ability to get by on the fly, responding to whatever
situations arise. I am strategic, Randy is tactical. I can plan all
I want, so that we have every supply handy when we change Max's
broviac dressing, a painstaking procedure that must be kept sterile.
But when Max fidgets and his lifeline flops around in unpredictable
ways, Randy is the one to swoop in and secure it.
Randy is systematic. He may not think about the future, but he knows
where everything is in the present. I once feared that he was not far
from becoming jiji, whose labeling of scissors with their places
("family room," "den") is legendary. Randy is far from becoming Nana,
who finds the idea of a silverware organizer tray (what's the point?)
hilarious. But now Randy is the one to impose order on our reams of
medical information and crates of supplies. These things make a
little more sense in their places.
Randy doesn't worry. He has saved Max from several unnecessary trips
to the hospital.
Randy is good at nursing Max. I have received fervent support for my
continued nursing and pumping, from short gut moms and regular moms,
from moms who nursed their kids through their third birthdays and moms
who were unable to nurse. Randy has always done whatever needed to be
done to make it possible -- from shuttling Max to and from my hospital
bed at all hours in the early days, to protecting my pumping by
shouldering our responsibilities during these recurring 15-minute
windows ever since. Our shared duties have shifted from medical lit
reviews and doctor conferences to just playing with Max. Randy was
right when he said WE are lucky to be nursing.
Due to a mis-entry in my calendar (a strategic error), we celebrate
our special Father's Day a week late today (a tactical response). Max
has little idea about the tactical, systematic, relaxed, nourishing
ways in which Randy is an amazing Dad. And these are just some of the
traits that have at times perplexed me. There's much more -- much
more that makes Randy an amazing Dad that is, not that perplexes me.
The clowning is one aspect that Max is better positioned to
appreciate, as Randy swings him around, tickles him silly, and faces
off with him in babble-fests. Max will have plenty of time to get to
know and love the rest.
Mon June 25, 2007
Max joins the do-not-call list. He is doing well enough for us to
update his status on the transplant list in Pittsburgh to "inactive."
If organs become available, we will not be called. Our chances of
getting called have been dropping anyway, with Max's liver healing and
the need for transplant becoming less urgent. Max will still accrue
waiting time on the list while inactive, which will boost his priority
if he ultimately needs to return to active status. Meanwhile, we have
the luxury of time to see how his intestine adapts, hopefully
permitting increases in feeds and decreases in IV nutrition -- and
maybe, just maybe, allowing Max to avoid transplant altogether.
Tue June 26, 2007
Max crawled across the room! Max crawled across the room!
The daughter of one of my colleagues once played with Fuzzy in our
bedroom. She came running out exclaiming, "The cat jumped on the bed!
The cat jumped on the bed!" Seeing our puzzled faces, her father
explained that their cat was 20 years old, so Emma didn't have a
concept of cats as mobile creatures.
We've always attributed Max's motor delays to his multiple abdominal
surgeries and extended hospital stays. Those factors probably
contributed, but liver damage and resulting reductions in caloric
input might have played a larger role. Kids like Austin and Ellie,
who avoided these complications, have been running around for some
I feel Emma's exuberant wonder as I watch Max crawling around, each of
his excursions more confident than the one before. I am bursting with
pride. I almost understand the bumper stickers parents use to
broadcast their kids' accomplishments. My boy can crawl!
Max can't get enough. As soon as he is set down, he shifts into
crawling position and goes. It doesn't matter where. It's like
what we would do upon discovering we could suddenly fly.
Fri June 29, 2007
Neon vomit was our first sign that something was wrong the day after
Max was born. It's back. It has actually been back since Tuesday
night, when we added pectin to his g-tube feeds. Pectin should
thicken the mix (in the same way it thickens jellies), to help slow
transit time and allow greater absorption.
But vomiting may indicate the pectin is slowing things too much for
Max and creating a backlog. So we decreased it to a 15 percent dose
Wednesday evening, and cut it entirely Thursday morning. Max seemed
better Thursday, with just a few minor spit-ups as opposed to a steady
stream. But the steady stream resumed last night and this morning.
It may be unrelated to the pectin.
GI Jason instructs us to check into the ER. Max gets blood drawn, and
has abdominal x-rays taken to check for any obstructions. His labs
are gorgeous. His bilirubin is almost normal, and his hematocrit has
risen on its own (without a transfusion), perhaps thanks to iron drops
he has been taking orally. His CRP is a nice low .6. CRP has been a
reliable indicator of infection for Max, so this number is
particularly reassuring in light of the 100.9 temperature he registers
His x-rays show no obstructions, though this measure may not be the
most sensitive. We're scheduled next week for a routine upper GI
study, which will trace a contrast agent through Max's intestine and
should be more diagnostic. The doctor suggests today's x-rays weren't
worth doing, because Max has so little intestine to evaluate. "He's
got like what, this much?" The doctor holds up his hand with his
thumb and forefinger outstretched to demonstrate just how little.
Randy comes to Max's defense, explaining that his surgeon noted
significant intestinal adaptation during the removal of his
nonfunctioning bowel last September. Not a day goes by without us
wondering how his intestine continues to adapt.
Most of this 6-hour ordeal is spent waiting. Waiting to get checked
in, waiting for permission to feed Max, waiting for a second blood
draw because the sample needed for cultures was forgotten during the
first draw, waiting for the doctor to make his hand gesture and tell
us we can go home.
We will keep an eye on Max's temperature (which has been dropping
since check-in), wait for word on the cultures, and adjust Max's feeds
(particularly his overnight ones, which seem like the biggest culprit)
to try to reduce his vomiting until his upper GI study next week.
We remind ourselves that tomorrow will be better. We will celebrate
Nana's birthday belatedly, since she visited us in the ER tonight
instead of being taken out for dinner. Then we realize that we might
get the call to check in to the hospital tomorrow. Well, if tomorrow
isn't better, then the next day. Or maybe the one after that.
Sat June 30, 2007
I have been panicking quietly the last few days. But this morning,
with Max's green projectile vomit running down my leg, I lose
it. I yell for Randy, who is sleeping. I yell for Nana, who can't
hear me. Max starts wailing. That gets everyone's attention.
We check into the ER, again. And with his temp now up to 102, Max
gets checked in for another stay at the inn. Labs are drawn, broad
spectrum antibiotics are started -- the usual. Except this time, Max
looks like he might actually feel sick. I rub his back. I remember
how good it felt when baba did this for me as a kid. Max seems
comforted by it.
The big fear is that Max has some kind of obstruction that could lead
to a loss of precious intestine. The doctors think this is unlikely,
because Max shows no abdominal pain or discomfort, and he is producing
output from his stoma. His upper GI gets rescheduled to happen during
our stay, and will hopefully confirm their assessment. Max's CRP is
up from .6 to 1.2 -- elevated, but not as high as it tends to run for
full-blown infections. The doctors offer their best guess, that Max
has a basic stomach virus that is just slowing down his intestine more
than it would most.
Max seems more like himself when he wakes from his afternoon nap. He
enthusiastically waves good-bye to his doctors (before they are ready
to go), and repeatedly signs "more" to me. This is his favorite sign
these days, formed by shaping each hand into an O and tapping the
hands together. Max first used it to sign for more milk. He used it
for Nana recently when she set him down after cuddling him. He signs
it to me after I abruptly stop singing a silly song, when the doctors
walk into our room. I oblige him.
We will continue to wait for word on Max's cultures (yesterday's is
still negative), to watch his temperature (it returns to normal
tonight), and to limit his feeds in hopes of reducing his vomiting.
And we'll celebrate Nana's birthday on her next visit to Boulder.
Sun July 1, 2007
We've been hoping for Dr. Puder to be wrong, just once. He's the one
who spurred us to action yesterday. Projectile vomit and a rising
temperature were enough for me, but Randy was more responsive to Dr.
Puder's urgings to get an upper GI study immediately, to check for any
Our best attempt at "immediately" is this morning. The doctors here
expect the upper GI study to be uninformative -- stuff will pass
through smoothly, Max will eventually stop vomiting, and we may never
know what caused this episode. The barium milkshake is inserted into
his g-tube. We watch on the monitor as it fills his stomach and makes
its way through the upper part of his small intestine. Then it seems
to stop. Then Max vomits milkshake. A catheter is inserted into his
stoma, and bile and milkshake gush out. The radiologist notes a
restriction in the intestine just above the stoma. She inserts
milkshake in through the stoma to get a better image.
Strictures like this are apparently fairly common in short gut kids.
The final section of Max's intestine may be less ganglionated than his
upper intestine (ganglion cells migrate from the top down), making it
more vulnerable. Perhaps Randy and I can now stop second-guessing
whether we should have pushed for more of his questionable intestine
to be kept, to try to maximize food absorption.
Dr. Puder was right about the upper GI study being informative. Maybe
we should know better, but now we can't help but hope that he's wrong
about how to treat the stricture. He recommends re-doing the stoma,
bringing the intestine out just above the restriction -- another
surgery, a loss of intestine. The surgeon here dilates the stricture
manually this afternoon (a 5 minute procedure), and believes this
treatment is likely to address the problem. If so, Max's stoma output
should increase and his vomiting should decrease over coming days.
Mon July 2, 2007
Hoping Dr. Puder is wrong is probably a sign of trouble. Max
projectile vomits a couple times during the night. His stoma output,
if anything, decreases.
Other families have been here. It doesn't matter whether they're in
Boston, Pittsburgh, or Tallahassee (all places we've received
supportive emails from during this hospital stay). They know the
uncertainty that we're trying to not let consume us, the chairs we're
sleeping on, the din streaming into our room at all hours. And they
know the waiting.
We wait all day to talk with the surgeons about the plan. One comes
by around 1:00, to drain Max's stoma with a red rubber catheter. The
contents fill a 60 cc syringe, relieving pressure that has built up
despite our regular draining of Max's stomach via his g-tube. The
surgeon says the team will be by in an hour to discuss the plan.
An hour turns into six hours. We consult with Boston throughout this
window. Somehow the rules of endless waiting don't seem to apply to
Dr.s Puder and Gura, whether we're emailing them just before falling
asleep, immediately upon waking, or during regular hours like now.
Remarkably accessible rock stars.
The Denver surgeon, Dr. Karrer, provides some reassurance about what
may be happening: the abdominal muscle around Max's stoma may be
pushing up against it, causing the stricture. He proposes two
main courses of action. The first is to progressively dilate the
stoma (futher than yesterday's dilation procedure), under general
anesthesia. This procedure may suffice to get things flowing again.
He gives it a 50/50 chance. If the stricture seems too tight for this
to work, the second option is to revise -- and reduce pressure on --
the stoma by cutting into the surrounding muscle.
We call Dr. Puder. He and Dr. Karrer talk. We talk further with each
of them. We agree to proceed with the plan.
Max is summoned for surgery an hour later. He is calm and cuddly in
his Curious George pajamas, as he is carried off in the arms of the
anesthesiologist. We get the call to meet the surgeon a mere 20
minutes later. He explains that he was able to go with the simpler
procedure of progressive dilation. The stricture seemed
muscle-induced in terms of its feel and location. He irrigated the
intestine afterward, and the contents emptied out of the stoma -- a
Max is fussy when we reunite with him in the recovery room, but he is
asleep in Randy's arms within minutes, and easily transitions straight
Now we hope again for more stoma output, less vomiting. If we don't
get it, we will turn to the more invasive but more definitive stoma
Tue July 3, 2007
Dr. Puder doesn't say "I told you so" when we update him this
morning. The progressive dilations didn't work -- still no output
from the stoma. But no vomiting either, thanks to heroic g-tube
draining by Randy throughout the night.
Max has no idea what all the fuss is about. He wakes us at 5 am
with his singing. He busies himself with pointing and talking and
crawling for most of the morning.
The day progresses much like yesterday. Red rubber catheter guy comes
to drain the stoma around 10:00, and indicates that the surgeons will
be by within a couple hours. We don't fall for it this time. I head
home to replenish our supplies, while Randy consults with Boston.
We may be done hoping that Dr. Puder is wrong.
Everyone seems to agree that the stricture alone is not enough to
cause the current lack of flow. Dr. Puder believes that the other key
factor is the reduced innervation of the intestine near the stoma.
Last summer's biopsies revealed good ganglion cells at 20 cm down, no
ganglion cells at 30 cm, and some ganglion cells in the transition
zone at 25 cm. Max's stoma was brought out at 25 cm. With the
development of the stricture, the less ganglionated intestine may not
be capable of pushing things through. Cutting the surrounding muscle
might provide a short term fix, but this section of intestine may
always be vulnerable to this problem. So Dr. Puder argues, again,
that the stoma should be re-done just above the stricture. Yes, this
means losing intestine, but just a small amount that is not doing Max
any good. It's like giving up deep fried comfort foods -- not
something you feel like doing, but probably for the best.
In contrast, some of the Denver GI folks believe Max has a temporary
dysmotility caused by a viral infection, which will resolve with time
and with less radical treatment of the stricture. Max's viral tests
were negative, but these do not screen for all viruses. A virus would
explain why his temperature was occasionally elevated.
We prepare to present Dr. Puder's case to the surgical team here,
under the assumption that Max will be having one surgery or another
today. But a couple hours turn into ten. And it's only the red
rubber catheter team who arrives at our room tonight, instead of
surgeons to discuss decisions with. Those discussions must wait until
Wed July 4, 2007
When our friends Dick
and Jan came to Boston, they carried a sackful of Max's favorite
stuff from Boulder. We moved home a week later. When we checked into
the hospital last month, I packed almost as much luggage as we took to
Boston. We were home the next day. It's a reliable trick. Yesterday
I replenished our clothes and food and medical supplies here for the
long haul. Today we're home -- watching fireworks from our backyard,
after I manage to convince Randy to let Max sleep through them.
Denver's theory about why nothing is coming out of Max's stoma is the
reason we're home. Dr. Puder's theory is the reason we'll keep a
packed suitcase in our car again.
The Denver docs believe that Max had a viral infection, which could
cause dysmotility in his intestine. We had recently increased his
feeds and added pectin to slow things down. All of these factors may
have converged to produce ineffective pressure to push things through
the stoma opening (which is constrained by the surrounding skin to be
relatively narrow). The resulting backlog would lead to dilation of
the intestine (which we see today on the films from the upper GI
study), rendering its peristaltic motion less effective. If this
theory is correct, the problem should resolve with time for recovery
from the virus and red rubber catheter draining of the stoma to help
the intestine return to its normal size. If this theory is incorrect,
Max's stoma will not start to drain on its own. We would go back to
the hospital and likely re-do the stoma, hopefully with little lost
from the wait. And we would make a point of provisioning for a
Fri July 6, 2007
There are times when I feel like I have things together. Times when I
can't relate to the sadness that people express upon hearing Max's
story. Times when I am overwhelmed with an appreciation of our lives
as ours to live as fully as we choose, whatever hurdles we face.
Anything is possible. I feel like this often.
But there are times when I deeply relate to a comment passed on by
Christian's mom -- that sometimes you need to put blinders on to focus
on getting through the current situation. Don't think about the
longterm future, don't think about other short gut kids. Just do what
it takes to get through these moments. This was the advice of Ed
Barksdale, a Pittsburgh surgeon who is the object of much adoration
when transplant families talk. The advice initially struck me as
The need for blinders will sometimes kick in for no apparent reason.
I'll just find that I can't handle thinking about what issues Max will
be facing in a year, a decade, a lifetime. (I was actually slow to
recognize that his issues may be lifelong. I ignored posts from young
adults on a short gut mailing list at first, thinking them irrelevant
to my short gut baby.)
Sometimes the impetus for blinders will be obvious, like now, as we
wait for stuff to come out Max's stoma, and I wonder if it ever will.
Our red rubber catheter draining is keeping him comfortable and happy
-- no more vomiting, lots more crawling and pointing and laughing.
The Denver doctors think it could take as long as a month before
things start moving through his intestine on their own again. And
perhaps before the blinders can come off again.
Sat July 7, 2007
Max pauses in the doorway of his room this morning. I try to lure him
back with trucks. He usually rushes over for anything with wheels.
Max looks at the trucks. He looks at me. He looks out the door. And
off he goes. Until now, the slippery hallway floor had convinced him
to stick with the comforts of his carpeted room. I watch his little
butt wriggling around the corner as he makes his first getaway. I
follow with his backpack, as he crawls to the foyer and discovers a
new form of wheeled entertainment -- skateboards. Roll them away,
chase them down, repeat.
This afternoon, we forego the skateboards for the stroller and walk to
the wedding of Rich and Erica, former grad students at CU. Randy and
I meet several parents, while Max plays it shy with their kids. We
discuss the foods our babies eat and the sleep schedules they keep --
a welcome change of pace from our recent focus on colors, quantities,
and interpretations of vomit. It's good to venture out. I just wish
I felt less like an imposter.
Sun July 8, 2007
Max had the tiniest bit of output from his stoma last night. Today he
puts out a similar dribble. It's less than 10 percent of his usual
production. But something feels like so much more than nothing.
Tue July 10, 2007
Still draining, still dribbling. Still having some minor temperature
fluctuations, and a bit of vomiting last night and this morning
(hopefully consistent with this being a virus that we just need to
wait out). But still happy. We go for a checkup at Children's
Wed July 11, 2007
I sold my mountain bike a few days before Max was born. I hadn't
ridden it for a year, and figured I wouldn't be riding a bike for some
time. But today, the best way to coordinate our research meetings, a
department party, and Max's care is for me to ride Nanny Kate's bike
to school. It's an antique cruiser -- no gears, brakes that work by
pushing backward on the pedals, tassels on the handlebars. I feel
like I'm 12. A very happy 12. Even better, Randy and I later take
turns riding the bike and pulling each other on a skateboard to get to
the party (where Kate swaps Max for her bike). And I update Randy on
the morning's checkup.
Dr. Soden (aka GI Jason, Max's primary doctor at Children's) and Dr.
Partrick (Max's surgeon) were out of town when Max was in the hospital
last week. They're back, and they are leaning toward the
less-ganglionated-bowel explanation of Max's lack of output and away
from the viral one, because:
1) Max still isn't putting much out of his stoma, even though we are
15 days out from his first bilious vomit and his intestine is not
physically blocked. Dr. Soden would have expected a virus to resolve
within 10-14 days (in contrast with the up-to-a-month estimate we
heard from other doctors here last week).
2) Problems with less-ganglionated bowel could develop at any time
(again, in contrast with what we heard last week, that the late onset
of this problem challenges the less-ganglionated-bowel idea, because
blockages typically occur within a month after surgery or injury).
The plan is to allow a bit more time to see whether this will resolve
-- based again on the argument that waiting won't hurt anything, and
we can manage things with our red rubber catheter draining. Max will
be seen by Dr.s Soden and Partrick next Friday. If his output has not
improved, then we will discuss surgical options.
Our friends at the department party ask how Max is doing. We say
great, but that he may need another surgery soon. It doesn't seem
like a sensible answer, but I think it is in the grand scheme of
Max rounds out his day by nursing for the first time since this
episode began. I worry that he will have forgotten. This has been
our longest break since his first couple months in the hospital.
(Bilious vomit turns out to be a more convincing reason to stop
nursing than allergies). But it's just like riding a bike.
It feels so good to remember how.
Thu July 12, 2007
I wasn't quite right when I said that waiting wouldn't hurt
It is hurting Max's growth. He has been losing weight over the last
couple weeks. We had stopped his feeds entirely to reduce his
vomiting. Now the red rubber catheter draining of his stoma is
allowing him to gradually start eating again. We don't know when he
will get back to his prior level of feeds though. In the meantime, we
will extend his TPN time to increase his nutrition. Max will be
hooked up to his pump 24 hours a day.
This turn of events feels brutal. We had been looking forward to
progressively increasing Max's untethered window from 6 hours, but
instead it has been cut, to 4 hours last month and to 0 today.
Two things help to reassure us. First, this loss of freedom is
temporary, a way to help Max through rough patches with his intestine.
Second, the sadness we feel is really for ourselves, not for Max. Our
friend Michael Frank left today after visiting for a week. He pointed
out often how Max seems so happy he can barely contain himself,
squealing, laughing, and playing. This is true whether he's tethered
or not -- it makes no difference to Max. Trying to be more like him
in this regard wouldn't hurt anything.
Fri July 13, 2007
Max knows Yay! He hears it often. Tonight he pulls himself from a
kneel to a stand with help from Randy's hands and legs. He wobbles.
He steadies himself. As we cheer "Yay!" he leans purposefully into
Randy's legs so that he can free his hands. He claps for himself,
Sat July 14, 2007
Everyone talks about how quickly these years fly by. But I have a
hard time imagining how the transitions will occur. At a party this
afternoon, Max hangs out with an older crowd. Big Max is 5, and has a
book about bugs -- fierce creatures that tear and crush their prey.
He wants to hear all about them. His brother Henry is 3, and has a
book on dragons and warriors. He flips through it, pointing out the
mean guys. Our Max has Snuggle Puppy -- a singsong tale about the
boundless love felt for the fuzzy little title character. Max is
unusually fussy and wants to be comforted for much of the party. When
he's ready for fierceness and mean guys, will these days really feel
like they were just yesterday?
Mon July 16, 2007
Most games don't sound all that fun based on their descriptions:
forming words on a board from a selection of 7 tiles of letters,
filling the numbers 1-9 into each of 9 3x3 grids, or estimating the
chances that your hand of 5 cards will beat someone else's.
The magic of language development seems at least as ineffable. We
know some brilliant researchers in this field, colleagues whose talks
make you tingle with excitement. But still, we had no idea. No idea
how fun it is to ask Max where his nose is, and to watch him point to
it. And how fresh this game feels, even as we proceed to ask him
about everyone else's noses. And then their hair.
Max's face fills with a knowing grin, watching us make the sign for
tiger at the zoo (where we celebrated our final 20-hr TPN bag and
untethered window yesterday). And I feel like jumping up and down
when Max imitates the sign, pulling his splayed hands out from his
mouth, and when he later produces the sign himself upon seeing a tiger
in a book from Aunt Katie.
Some of Max's signs are variants of the standards. We sign "bear" by
crossing our arms and making clawing motions and a fierce face. When
Max signs for bears, as he likes to do throughout the day, he crosses
his arms and rolls them around each other. His face is not fierce.
Other signs are entirely his own creation. He pats his head with both
hands. He curls his hands into loose fists, then lightly shimmies his
fingers, like he is dribbling sand. He looks at us intently, seeing
if we understand. I am reminded of the time Randy and I babysat
Toshio, when we were still Linux purists, and we couldn't figure out
how to insert a DVD that he wanted to watch into a mac. Baby Toshio
watched his failed attempts to communicate with us in disbelief.
When I ask Max if he wants mama to hold him, he reaches his arms out
to me. I want to run and wake Randy to share the news.
Scrabble, Sudoku, poker -- I find most games addictively entertaining.
Conversations with Max are fun beyond words.
Tue July 17, 2007
We had forgotten how much we like our surgeon here, Dr. Partrick.
It's easy to forget, since each time we see him, we hope to never see
But we are reminded immediately during a consultation with him this
afternoon -- a few days earlier than our joint appointment with Dr.
Soden, since Max's output has not improved much and the surgical route
looks more likely. Dr. Partrick hasn't seen (or operated on) Max
since last September.
He has heard all the talk about how well Max is doing. When we were
in the hospital a couple weeks ago, even distant doctors knew about
the miracle of Omegaven and what it has done for Max. Dr. Partrick
has also seen how good Max's labs look. Our recent hospital visit
overshadowed the fact that his bilirubin levels actually normalized
that week. Normalized! After months and months of reports marked
CRIT and HI. But Dr. Partrick is still amazed to see Max. He notes
how thrilled Dr. Puder must be with how his patient is doing. I say
yes, but that Max is just one of dozens thriving like this.
Dr. Partrick has done all of Max's intestinal surgeries, including the
one with progressive biopsies to determine that his stoma should be
brought out at 25 cm of small intestine, in the transition zone
between ganglionated and aganglionated intestine. He believes that
this less-ganglionated end is the cause of Max's functional blockage.
The problems may have worsened as this section of less-functional
intestine grew, and might have been complicated by other factors, such
as tightening of the surrounding abdominal tissue or a virus. But the
aganglionosis is likely the root cause. The red rubber catheter
slides in easily enough, suggesting the problem isn't solely about a
stricture. So, we are facing Max's fifth major surgery.
The plan Dr. Partrick outlines is to go back through Max's existing
abdominal incision. The intestine will be assessed for any
restriction from the abdominal fascia -- if one is present, it will be
cut away to free the intestine. The intestine will be assessed for a
transition point from dilated (likely functioning) intestine to
non-dilated (likely non-functioning) intestine. Biopsies will also be
taken to confirm the presence of ganglion cells. These results should
converge to indicate how much intestine should be removed and where
the stoma should be redone.
As much as we've been expecting the surgical route, it is still
jarring to face it. But as Dr. Puder emphasized at the start of all
of this, it's bad intestine we'll be losing. And we are
reassured by Dr. Partrick's clarity and thoroughness in stepping us
through each aspect of what he will do and why. He knows what Max
needs. He knows what we need.
Now we wait for the call to schedule the surgery.
Wed July 18, 2007
When I have a sore throat, I sometimes check the back of my mouth in a
mirror to see how bad things look. But each time, I realize I don't
know what to compare to, since I never think to look at my throat when
I am healthy.
Max and I are sniffly. This is his first cold -- not a bad track
record for a 14-month-old. This is the first time I've been sick in
over 2 years.
His stoma revision is scheduled for July 30. It will be his first
major surgery in 10 months. Randy and I are bracing ourselves, for
the anticipatory anxiety, the hours in the surgical waiting area, and
the bumpy post-operative pain management process. But we can't
foresee all that we might want to brace for.
I won't think about my throat once I'm over this cold. And we'll move
on from this surgery, on to something approximating life as usual. I
hope my next cold comes before Max's next surgery.
Fri July 20, 2007
If Max and I are suffering from the same virus, he is seriously
undermining my case. I pathetically whisper (my aching throat!) my
demands to Randy to track down chicken soup (without noodles, since
these are usually made from egg). Anything to ease my misery,
please! Meanwhile, Max scrambles up steps and over obstacles, and
would fly headlong off our bed if we would only let him.
He does have his demands. I prepare his feeds with my back to him
this morning. Out of the corner of my eye, I see that he is signing
for more. But when I continue uninterrupted on my task, he brings his
cupped hands together loudly enough for his sign language to be
heard. If only my impatience were so endearing.
Sat July 21, 2007
I guess this has been building gradually, but it feels like the change
happened overnight. Last night. Max is now a fully qualified holy
terror -- in the best possible sense. He wakes at 5:30, and skips his
usual hours of napping throughout the day in favor of one 20-minute
catnap in the morning. Otherwise, it's go go go. Crawl, climb, play,
pull-to-stand, step. Beam, laugh. Talk, sing, tell the neighbors.
We walk to the farmer's market at daybreak, past sleepy houses with
open windows, with Max's happy warblings drifting up from the
stroller. We shop for toddler-proofing supplies in the afternoon.
Max is content in the stroller and shopping cart, but it's scampering
around that he can't get enough of. After a long day for all of us,
he goes down easily for the night. When Randy prepares to do his
final cares hours later, he finds Max giggling in his sleep,
scampering even as he dreams.
Wed July 25, 2007
When we look at old photos, Randy and I are shocked by how yellow Max
looks. We didn't realize how sick he was until he got better.
Several things have come together in recent days, probably not
coincidentally. There's the holy terror business. Max has also
transitioned to a big-boy sleep schedule -- one big nap in the middle
of the day, instead of two shorter naps early and late. His
temperature has been notably stable. He is producing more stuff out
the stoma -- closer to 20 percent of his usual production, up from
less than 10. He has always seemed like a pretty happy guy, but now
he seems even happier.
In retrospect, we can see that he was probably fighting something the
last few weeks, a bug that could have exacerbated his stoma blockage
(though the root cause is still presumably the less-ganglionated
intestine). He should fully recover from this bug in time for his
surgery, which has been rescheduled for Tuesday morning. We're
relieved to have it moved from Monday afternoon -- further from the
chaotic shift change and the departure of the pain management team at
I wonder what will shock us when we think back to this time.
Thu July 26, 2007
Randy and I are exhausted. But after Max goes to sleep for the night,
we still feel tempted to wake him for more playing.
Max will occasionally give Randy the last bit of fun during his night
cares. Last night, he woke suddenly during his diaper change. He
pointed insistently at the window, grunting. He seemed to be saying,
"I've been meaning to ask you something, and I really want to know the
answer." He kept pointing. He was only satisfied (and in fact seemed
rather pleased) when Randy pointed outside, imitated the chirping
sounds coming through the window, and explained, "Crickets!"
Fri July 27, 2007
We didn't always
would do its thing. Those old photos remind us about all the
uncertainty we had
all the fear that Omegaven really was too good to be true.
David is the 6-month-old whose
parents found Max's page after their doctors told them there was no
hope. He now has near-normal bilirubins and is preparing to return to
Hackensack from Boston. Connor
is a 7-month-old who has been staying at "our" apartment in Jamaica
Plain (and is one of many who learned about Omegaven from Ellie's
blog, the Short Gut
News). He is heading home to Arizona after a 6-week stint above
the bakery. Nora, a
3-month-old in Tallahassee, gets to stay there -- Omegaven will come
The babies continue to prove the skeptics wrong.
Sat July 28, 2007
Once again, Max's pajamas are being soaked in water to prevent his
blood from staining them.
We start a video-skype session with family this afternoon. Cousin
Toshio wants to see Max standing, and we want to hear the British
accent that Toshio has allegedly developed during his third summer in
Germany. But as we sit down to talk, Randy feels moisture on Max's
pajama leg, and discovers a concentrated silver-dollar sized spot of
blood. He finds a leak at the tip of the broviac and clamps the
catheter above it. I call the GI doc to let her know we're coming.
We pack our supplies and are quickly out the door. We make good time
on the drive to Denver, and arrive at the hospital 45 minutes after
finding the leak. So far, so good.
Timing is important. Repairing a broviac is a delicate but
straightforward procedure, which takes all of 5 minutes: sterilize
everything, cut off the damaged catheter, insert the stent that sits
inside the replacement end into the remaining catheter (attached to
Max), and glue everything together. But this procedure has to happen
before Max's blood clots inside the catheter we've clamped off.
Otherwise, instead of a 5-minute repair, he needs surgery to thread an
entirely new broviac up to his heart.
This is why we rush to the hospital, and why we call in advance so
that the repair supplies can be waiting when we arrive. We're ushered
into a room. And that's where we wait. It's where we wait for the
next 130 minutes.
It's an eternity for us, but it's not too late for the repair. The
surgeons demonstrate its success by drawing blood from the broviac and
flushing it with saline. The nurse then flushes it with heparin,
which prevents the blood from clotting when the broviac is not in use.
(The surgeon suggests that if the broviac breaks again, we should
flush it with heparin right away to prevent clotting. But everyone
else has advised us to just clamp the broviac until repair, since
flushing a damaged line could cause infection or send particles from
the damaged section into the bloodstream.)
There was no obvious cause for the broviac break, either this time or
the other time, in April. We've been told that broviacs can just
break from wear and tear. We made it 14 weeks and 1 day until our
last broviac repair. Today's repair came just 4 days sooner.
Scheduling out for the next one puts us at Halloween.
We're thinking it's time to get trained on this procedure.
Mon July 30, 2007
It's a good thing we're not superstitious.
The last time we had Dick
and Jan over for dinner was two months ago. We had a really nice
evening, celebrating the fact that we finally felt settled enough to
cook for friends. The next morning, Max was lying in his pool of
This time around (last night), Dick and Jan bring over and cook a
spectacular 4-course dinner. Jan says she's glad we didn't do this on
Friday, or our dinner would have fallen the night before a bloody
This morning, I email to say thanks for dinner and to let them know
the episode has not repeated. I can see on the video monitor -- the
monitor purchased after the bloody-sheets episode -- that Max is
waking happily and there is no dark pool of blood. Max calls out, so
I leave the email unfinished.
Max's face is splattered with blood. It's all around his nose and
mouth with a bit around his eyes. His tubes look fine. A big clump
of blood on the bridge of his nose looks like the source. I dab at
it, thinking he has fallen and wondering if he will need stitches.
The clump comes off easily. The skin underneath is pristine. I
notice now that there is blood on his hands and pajama arms. It is
dried. The blood on his face isn't particularly fresh either. I
realize that Max is trying to have his normal morning conversations
with me. He is fine. It seems like it was just a bloody nose.
Still, for our next evening with Dick and Jan, maybe we'll try
Tue July 31, 2007
Max's ostomy now looks like his those of his friends. That's what
hits me when I see it for the first time after this morning's surgery,
once he is sleeping in Randy's arms.
In the OR, the intestinal biopsies show no ganglion cells at 2 cm from
the stoma, minimal ganglion cells at 3 cm in, and great ganglion cells
at 4 cm in. So the intestine is cut at 4 cm, and the stoma is re-done
there. Dr. Partrick notes that it looks like the bad intestine hasn't
grown much, but the good intestine has adapted nicely (and not just as
a result of dilation from this blockage). The new stoma is noticeably
larger in diameter.
All of this revision is done through a small incision directly around
the stoma. Max has grown enough that his existing incision -- the
long one used for his 4 other major surgeries -- is now too far from
his stoma to be of much use. So Dr. Partrick doesn't open Max up
fully through this incision as he had originally planned. This means
no liver biopsy, and no visual assessment of his entire intestine.
(Ellie's mom recently told me about another breastfed short gut baby,
whose intestine tripled in length after a year.) We knew to not get
too attached to the plan, but we can't help but feel a little
disappointed at not getting this information. More importantly
though, the revised course means no large cut to heal from, and little
manipulation of intestine.
Max's main complaint is just the IV in his hand (there in case he
needs additional pain medication). This seems to speak well of how
his epidural is working.
We couldn't have asked for a much better outcome -- a problem clearly
identified and addressed, with minimal impact. From here, we will
manage Max's pain, gradually re-introduce feeds, and wait for his
stoma to start fully functioning again. It will hopefully empty
everything so that he doesn't get backed up or need draining, but not
produce too much so that we can continue to increase his feeds. We
hope to be home within a few days. At least, that's the plan.
Wed Aug 1, 2007
Now I'm glad that Max cried and cried when he saw Dick
and Jan the other night. It saves him from an unnecessary dose of
Just after Max settles for the night, we are told that a patient who
has to be isolated will be moving into our room. We must move in with
a roommate down the hall. The room is just two doors down, but Max
wakes during the move. He cries for the next hour -- a crazed cry,
thrashing about. The nurses want to inject more pain medication, but
it doesn't sound like a pained cry to us. He sounds mad -- just like
when he woke from his late nap to see Dick and Jan.
We've been spoiled with the luxury of single rooms during most of our
hospital stays. Our move is at least as tough on Max's 14-year-old
roommate as it is on us. But once Max calms in Randy's arms, he
sleeps soundly through the night. No additional meds needed. When
epidurals work (as Max's has), they work wonderfully.
Today Max is back to crawling, sitting, kneeling, standing, pointing,
and talking. All in his crib, where he is constrained by not just the
usual TPN and Omegaven pumps, but also the epidural pump and multiple
monitors. His stoma starts emptying around 2:00, which allows us to
start providing the milk he has been signing for all day.
Now that Max is older, he is more obviously comforted by our presence.
But there's only room for one parent to sleep in the room, so I head
back to Boulder again after Max is down for the night. Randy is
better at coordinating our Omegaven pump with the hospital's TPN pump.
He can more easily maneuver the wires and tubes stretching from each
corner of the crib in to Max. He can sleep more robustly through
interruptions. Randy is also the one Max made a beeline for during
his thrashing cry. Max didn't need morphine, just Dad.
Thu Aug 2, 2007
Around Max's bedtime, we load him -- playing with his get-well
balloons from Ellie -- into the car. Max gazes out the window
intently for the first several blocks. He turns back to me with a big
grin, like he realizes what's happening. We're going home.
I'm a little nervous. Max vomited green at midnight, then again at
3:00 and 5:30 today. The surgeons are not concerned, because his
stoma is clearly draining. The vomit might reflect the usual swelling
and recovery associated with surgery, and possibly nausea from the
oral pain medication that Max starts today after his epidural is
removed. Randy thinks I get more worked up over green vomit than I
should. I hope so.
Fri Aug 3, 2007
Other than the larger stoma, there's no sign that Max had surgery 3
days ago. For better and for worse.
He's up by 7 and down by 7, with his big-boy nap from 11-1. He points
to determine our route for the morning's stroll, and shares his trucks
with Randy in the evening. In between, he fills Nanny Kate in on his
latest adventures. He crawls and cruises, seeming not to notice that
we've discontinued his pain medication.
But he also vomits green -- last night, this morning, and this
afternoon. His stoma produces moderate output overnight, but very
little today. We call the hospital. The nurse first tells us to
bring Max to the ER, but then consults with Dr. Partrick, who
instructs us to just go back to draining the stoma with the red rubber
catheter. We infer that this is a temporary measure, to allow Max's
intestine to recover from the surgery, the pain medication, and any
associated backlog and dilation. We also infer that this is exactly
what we would be doing at the hospital, so we may as well do it at
Randy, Max, and Dr. Partrick remain unconcerned. I can't wait to join
Sat Aug 4, 2007
Christian's mom can reassure me in a way that a bunch of unconcerned
guys can't. She has seen green vomit in the aftermath of surgeries.
She has seen it end a week after stopping pain medication -- meds that
their surgeons fingered for slowing down the bowel. This reassurance
reminds me to check the veritable treatise on vomit (colors,
quantities, and interpretations) sent by Ellie's mom back in June,
when this episode started. Sure enough: large green vomits after each
abdominal surgery. We aren't alone.
Max treats vomiting like a cough or sneeze -- he does it and moves on.
He mainly struggles just to keep playing while we try to clean him up.
But now our red-rubber-catheter draining is preventing his vomiting,
so he can romp uninterrupted. Today his mission is climbing the
steps, turning around, and throwing himself down them. He repeats
this sequence throughout the day, ascending with a look of
determination and descending with a giggle, fulfilling Randy's visions
for our padded mosh pit.
Mon Aug 6, 2007
I compare notes with two parents this afternoon. One is a colleague
who stops by my office. She says that she can't imagine what we're
going through, with all of the ups and downs and uncertainty (which
hasn't resolved -- no changes today). We get this reaction a lot.
The other comparison comes from a father who says that reading Max's
page is like reading the story of his daughter's life. (He is a
fellow short gut parent who found Max's page after googling Omegaven
-- the short gut wiki
is the first hit.) His daughter's story initially strikes me as
nothing like Max's -- different etiology, different surgeries,
different complications. But then I recognize the familiar rhythms of
their lives, all the ups and downs and uncertainty. And the hope.
They are waiting for Omegaven. He says Max's story is a ray of hope.
We continue to hope that Max's surgery worked.
Tue Aug 7, 2007
In the opening to one of his books, Bob Siegler states that his
children are not generally deviant, but they never fit the textbook
descriptions of cognitive development. Real life development is far
Max started off talking exclusively about Dada. Now he barely
mentions him. In fact, Randy's latest theory is that "Mom" refers to
me, and "Mamom" refers to Randy. Signs are also falling in and out
of favor. Max will gladly produce fresh signs like "dog" and
"light", but practically rolls his eyes when I try to elicit
"bear" and "cat." They're so last week.
He does have his standbys, like "more" and "milk" -- with different
signs for drinking from a cup vs. nursing. (The latter is the
fist-dribbling-sand sign that we couldn't decipher last month,
inexplicably given that this is basically the sign for milk, which we
taught him for nursing -- squeezing a fist as if milking a cow.) His
stoma problems have limited how often we can satisfy these requests.
But this morning, we get the go-ahead to reintroduce feeds, in an
attempt to stimulate his intestine. Max is downright giddy. Our red
rubber catheter draining continues to prevent him from vomiting. No
improvements in his stoma output yet, but the docs want to give things
another week. We didn't expect to wait that long. And the docs seem
surprised by the fact that his stoma worked well soon after surgery
but then stopped working. Max isn't one to fit the textbook
Fri Aug 10, 2007
Max's stoma is bleeding and shrinking. This concerns me, of course.
Just as predictably, Randy takes it as a good sign. Bleeding could
result from increased vascularization, a sign of healthy intestine.
Shrinking could indicate recovery from surgical swelling. Randy may be
right. Max's stoma seems to be putting out more on its own, while our
red rubber catheter draining of any backlog is yielding less. We are
gradually increasing his feeds (in a continued attempt to stimulate
his intestine), and waiting longer to drain him (to give his system
the chance to empty on its own). We will see Dr. Partrick for a
post-op appointment next Tuesday.
Sat Aug 11, 2007
Max is alive. We revel in this extraordinary fact each day. But some
days bring more stark reminders than others of just how lucky we are.
Like today, as we finalize our appeal for insurance coverage of Max's
treatment in Boston. We include letters from Max's primary doctors --
in Boulder, Denver, and Boston -- who paint the grim picture of where
we would have been without Omegaven. Had we faced the typical waiting
time for a transplant, Max likely wouldn't be here. Or he might be
just hanging on, with us futilely trying to stop the widespread
bleeding associated with end-stage liver disease. Instead, Max is
playing the piano for Aunt Katie over video-skype. He is persevering
on missions to get his small toys into the cat water bowl. He is
pointing at everything, demanding names and signs and rewarding us
with smiles of wonder. And he is putting more out his stoma. Life is
good. We hope our insurance company will agree.
Mon Aug 13, 2007
In theory, we leave for Paris in one month.
In practice: We have Max's (adorable) passport and 4 plane tickets.
Many members of his medical team -- most recently, his surgeon --
suggested their services might come in handy on this trip.
Nurse Practitioner Kristin will be the one joining us. She cared
for Max during his early days at St. Joe's, helped us out after we
returned from Boston, and travels the world through
Operation Smile. We have broviac repair kits on order, which the
three of us will get trained on.
We have an apartment awaiting us, and a local guide to whisk us to the
hospital if necessary. We have Max's medical records, and will get
key terms translated before we go. We have our talk abstracts
submitted (I arranged for Randy to also give a presentation). We have
TPN travel experts to consult with on plugging in pumps in Paris.
Friends around the city are eager to meet Max. Other Max-fans are
flying in from London and New York for the conference.
And, we have no idea what might happen between now and then. Just
Tue Aug 14, 2007
Dr. Partrick doesn't want to see Max again any time soon. He's that
pleased with today's post-op appointment. The non-worriers and vomit
consultants were right. As of this weekend, we have been able to stop
red rubber catheter draining and start gradually upping feeds. Max is
producing good stoma output and no vomit. We learn that a couple of
little bumps on his stoma are likely part of his body's attempt to
heal from surgery -- they should go away on their own, or we can treat
them with a steroid cream. If all goes smoothly, Max could be back to
his pre-blockage level of feeds by early next week. And hopefully on
his way to fulfilling Dr. Partrick's wish.
Wed Aug 15, 2007
I crave a Hollywood ending. We know we will probably grapple with
Max's issues all our lives, but it's so easy to wish for at least an
occasional episode -- like his recent surgery and vomiting -- to be
wrapped up cleanly. Instead, Max vomits again early this morning. We
first blame his oral iron (which he resumed last night and which can
upset the stomach) perhaps combined with the oatmeal and formula that
he gobbled down before bed. But as the day progresses, his
temperature rises and his energy falls. As usual, we can't take any
chances. Nanny Kate and I pack the suitcases while Randy finishes his
We're always relieved to be settled in our hospital room (a luxury
single this time around), after the usual several hours of waiting in
the ER, getting blood and urine drawn for cultures, and starting
antibiotics and Tylenol. Max's temperature starts coming down, and he
manages to show a renewed energy rolling around and smiling before
going down for the night. His stoma seems to be working fine.
Randy and I sit in our usual evening configuration, working on our
laptops -- just slightly closer together than usual. So far, the
worst part of being back is discovering that Max's 14-year-old
roommate is still here, weeks later. His case is acute rather than
chronic though, so he might just get the Hollywood ending we hope for
Thu Aug 16, 2007
Max's cultures are negative at 24 hours. If the same thing happens
tomorrow, we get to go home. Max passes the time with his trucks and
books, Animal Planet, and bursts of song. Randy hopes that Max is
just getting his pre-Paris hospital stay in early, and
Fri Aug 17, 2007
Max is letting everyone know what he thinks. He has been standing and
shaking the bars of his "cage." He is restricted to our hospital room
because he might have a virus, and kids nearby may be
immune-compromised. The room is small, so the restriction means that
he is often stuck in his crib. GI Jason refers to him as King Kong as
he all but beats his chest this afternoon. Other times, Max's cage
dance takes a gleeful bouncing-up-and-down form more befitting of his
Curious George pajamas. In between his bouts of monkey business, Max
experiments with all manner of talk -- Swedish vowels, consonants of
the day (yesterday's was D, today's is W), and carefully-crafted but
The viral theory seems increasingly likely. Max's CRP, which has
reliably skyrocketed with his bacterial infections, is a mere 1.6. We
haven't received the results of a viral test taken yesterday, but
these tests check for a limited number of viruses and so are not
definitive. Most kids might experience this presumed virus through
vomit (as Max did Wednesday and Thursday morning), fever (which Max
had Wednesday), and diarrhea (or high stoma output in Max's case,
yesterday and today). Most parents would get to wait this out at
home. We can't take the chance, because Max's fevers might signal an
infection in his bloodstream that needs to be treated immediately.
Thankfully, the bacterial cultures continue to test negative at day's
We are welcomed home by Randy's mom, who arrived in town moments after
we left for the hospital on Wednesday. Max points to her and says
"Nana." A perfect expression of how good it is to be home.
Sat Aug 18, 2007
A stranger approaches Randy and me to ask for our secret to a happy
marriage. She queries us about our courtship. We recount the bucket-of-fries
incident for her camera. I remember how I explicitly thought to
myself in the early days, "Stay away from this one." And here we are,
16 years later, wandering the Asian Festival on the Pearl Street Mall
with Nana, and Andrea and John (our Boston-era housesitters who return
to England this week), and Max. Our happy-marriage video segment --
part of an anniversary gift for the interviewer's parents -- ends with
His stoma continues to function just fine, supporting the idea that
his recent vomiting was unrelated to the surgery. We should be able
to move on from this episode and resume our longer-term plan,
gradually upping feeds as his system will tolerate.
Maybe we just need to get better at recognizing Hollywood endings.
Mon Aug 20, 2007
Does anyone know google?
We've been lulled into a false sense that the word is out there about
Omegaven saving babies' lives. After all, if you google Omegaven,
the short gut wiki on it is the first hit. If you google short gut,
Ellie's blog and the wiki main page show up in the top 10 hits. The
problem, we learn from Connor's dad tonight, is that these pages don't
come up if you search on what your baby is dying from -- TPN and liver
disease -- or if you search on short bowel. Connor's life has been
saved, but it took them 6 months of searching to find Ellie's page and
Omegaven. Other kids don't have that long.
If you know any google tips that could help direct families to
Omegaven, please let us know. If increasing links to our pages would
help their google rankings, please feel free to link from your web
It may help if you describe these sites using the key terms as listed
- TPN-associated Liver Disease:
Short Bowel Syndrome: http://grey.colorado.edu/shortgut/index.php/Short_Bowel_Syndrome_(SBS)_or_Short_Gut
- Short Gut:
- Omegaven: http://grey.colorado.edu/shortgut/index.php/Omegaven
- our kids' blogs
No word back from Oprah.
Tue Aug 21, 2007
Now we're dancing the google cha-cha.
On Eliana's great suggestion, I edit
pages on all things short bowel. I create a page on Omegaven, revise
the dire prognosis for short gut with a link to this Omegaven page,
and add additional links to it from wikipedia pages on TPN, liver
disease, and liver failure. I feel giddy again, and repeatedly jump
up from my work to hug Randy.
It's short-lived. Five hours later, my "allegation" that Omegaven
can prevent liver failure has been deleted. My links to the short gut
wiki and to the Omegaven blogs -- Max's, Ellie's, Connor's, and Nora's
-- have all been deleted. So have most of my links to the Omegaven
wikipedia page. The wikipedia administrator explains that parent
activism and a case study of 2 patients (the only paper with infants
published to-date) don't cut it. My allegation that Omegaven saves
lives is transformed to this statement: "It has gained popularity in
children in preference to the more commonly used Intralipid after case
reports that it reduced the risk of liver damage." Understatements
apparently do cut it.
I get the need for published, authoritative work. After googling me,
the wikipedia administrator, a Dutch doctor, gently suggests that my
professional expertise would be highly welcome on wikipedia pages
related to cognitive neuroscience.
It isn't nearly as easy for me to do something in that domain that
might save lives right now. So I'll keep my google efforts focused on
Omegaven. We've received good tips from several people in the know,
including Nora's dad (who does search engine optimization for a living
and just created a Short Bowel
Syndrome page). External links apparently do help, so please feel
free to link to these Omegaven sites. Our
goal is for google searches on short bowel, TPN, and liver disease to
produce Omegaven sites in the top 10 hits. Wikipedia can catch up
with us later.
Thu Aug 23, 2007
Next up may be the media cha-cha. But this time we're starting with
the steps back, so hopefully the next ones will be forward. Our
attempts to interest the media didn't pan out. Connor's dad
recently emailed 100 media contacts without luck, even getting
rejected by his city paper. We're stunned, with all the great angles
for this story. We brainstorm a concise list for reporters for the
The lives: Short gut babies treated on Omegaven have a 0% mortality
rate, compared with 37-90% mortality
rates prior to Omegaven.
The science: It's as simple as fish oil -- omega-3's instead of the
omega-6's in the standard soy-based lipid.
The politics: Doctors and parents are fighting political
battles to get Omegaven to the babies who need it.
The community: Moms and dads are getting the word out
through blogs and wikis, saving the babies of strangers who have been
told there is no hope.
The cuteness factor: Baby after baby has transformed from
sickly green to vibrant pink.
The doctors: Mark Puder and Kathy Gura at Children's Hospital
Boston: innovators, mavericks, saints.
Not to mention the ace in our pocket, should SHE ever come calling:
The haven: Many of us called a
donated apartment in Jamaica Plain home, thanks to Oprah's
Please spread the word if you can.
Sun Aug 26, 2007
campaign for Omegaven gets called off, due to concerns among the
short gut community that such efforts could backfire and jeopardize
the ultimate goal: doctors providing Omegaven as the standard of
care. Mainstream media coverage could make it harder to convince
skeptical doctors that this is the real deal. They need the
scientific papers to be published -- just like wikipedia, and just
like Randy and me in our academic lives.
campaign to reach parents is still on.
Max wants to help. This morning, he grabs onto my laptop stand to
pull himself to his feet, and stretches his full armspan to move back
and forth between my laptop stand and Randy's. He rolls our track
ball mouses. He curls his hand around from behind the screen to tap
the keyboard. He makes heavy use of the otherwise-neglected mystery
key beside the 1.
Max giggles at Fuzzy in our padded mosh pit, then rolls himself down
the steps at her. He staggers around the house behind a mini-grocery
cart. He seems to have transitioned from simply being a holy terror
to recognizing that he is one. We feel a loss of empowerment from
calling off the media campaign. It hasn't rubbed off on Max.
Tue Aug 28, 2007
When Toshio was learning the alphabet, he was puzzled by one of his
picture books. The B page showed a bear and the C page showed a cat,
but the D page showed an allosaurus.
After checking several ASL dictionaries last week, I finally tracked
down the sign for "truck" -- stacked fists moving apart. Max has
been signing for trucks ever since. But he can't quite accept that
the same sign gets used for dump trucks, fire engines, and forklifts.
One of his books, "Duck in the Truck," clearly crosses the line.
The title vehicle is actually a jeep. When I point to it and sign
"truck," Max looks uneasy. He points insistently at his backhoe.
Randy and I get caught up in the details too. Details like Max's
output, which has been high ever since his stoma started functioning
again. We haven't been able to increase feeds since his surgery.
That last bit of poorly functioning intestine may have been slowing
things down so that he could absorb more, until it blocked flow
completely and needed to be removed. Or maybe it's bacterial
overgrowth -- too many bad bugs relative to good bugs in the gut's
delicate balance. Some short gut kids cycle on and off different
antibiotics each month to treat or prevent recurring overgrowth.
We're hesitant, hoping that Max can get by with limited antibiotics as
some other kids have, perhaps by ingesting probiotics (the good bugs,
which we haven't tried yet), prebiotics (food for the good bugs, which
some people view as safer than the bugs themselves and which Max has
been on for a couple months), and breast milk (which can help
establish a good probiotic environment). Or maybe with just plain
luck. Each person ends up with a unique balance of hundreds of
species of bacteria living in the gut. Max has needed antibiotics for
bacterial overgrowth only once before, back in May. But his output
has increased over the last week, so on Sunday we started oral
antibiotics. They seem to be reducing his output, allowing us to
finally increment his g-tube feeds tonight.
We're also contemplating details about Max's allergies -- conflicting
details from skin tests versus blood tests. And we're working through
the details of trying to interest him in eating again after the long
hiatus around his blockage, hoping to avoid the oral aversions common
in children with short gut.
OT Judy pulls us back to the big picture today. She points out that
Max is acting just like a 2-year-old (on his 15-month birthday, no
less) -- willful, charming, and demanding. Playing with him is the
highlight of each day. But I'd better learn my backhoe from my
Wed Aug 29, 2007
Nanny Kate asked recently whether it's hard not to play favorites
among my grad students. I had just explained that one of them, Chris
Chatham, directed us to the Boston Globe article on Omegaven the day
it came out last July. Helping to save your advisor's baby is a
pretty good way to get on her good side.
Now all of us -- the short gut community and friends -- might just be
helping to save more babies. When you google "short bowel syndrome,"
the wikipedia page on it is #6. This site would have been useless
from the Omegaven perspective, since my edits to include information
about it were cut as parent activism. But Nora's dad persevered,
discussion among the administrators ensued, and the following line was
allowed: "Much hope is vested in Omegaven, a type of lipid TPN feed,
in which recent case reports suggest the risk of liver disease is much
lower." The mere mention of Omegaven on this page is crucial, since
googling that term then brings up a page of more up-to-date sites.
Searches on "short bowel syndrome liver disease", with or without
"TPN", now yield the short gut wiki on page 2.
That seems like good progress over the 10 days since Connor's dad
pointed out that these search terms yielded nothing about Omegaven.
But the good links are embedded among pages and pages of despairing
campaign to save lives continues.
We'll still ask tough questions when Chris defends his master's thesis
next month. Some things are harder to change than others.
Thu Aug 30, 2007
Max has my breast milk scraped into his back this morning.
His first skin test, just before his birthday, revealed allergies to
eggs and cow's milk. That's when we went on our vegan-plus-meat diet.
His first blood test, just after his birthday, confirmed those
allergies and expanded the forbidden list to include nuts, peas,
beans, wheat, soy, and corn. This information came in a letter with
the 1-line instruction to cut all those foods from his diet and mine.
That's when we shifted to meat, rice, quinoa, fruits, and select
vegetables. A more extensive blood test later showed yet more
allergies -- to rice, oats, strawberries, bananas, sweet potatoes,
chicken, and beef. The letter included the same 1-line instruction to
cut those foods. That's when we got a referral for a new
Not that we couldn't get by even with all those restrictions. Several
friends suggested pork lettuce-wraps. Allergy cookbooks sent by
colleagues Keri and Scott included dozens of safe recipes, along with
colorful cards from their kids with drawings of Baby Max and
well-wishes for happy eating.
But we wanted to understand the results better, particularly why the
blood tests suggested allergies that the skin test did not. So when
Max was recovering from surgery, we consulted with an allergist at
Children's recommended by GI Jason. Dr. Atkins explained that when
skin tests come back negative, they are 95% likely to be correct. So
we've been hoping that the blood tests might be showing false
positives, possibly because of the increased permeability of the gut
(both early in life, and in short gut kids). Foods proteins can seep
through the lining, leading to the development of antibodies but not
true allergies. Dr. Atkins also mentioned that blood tests can show
false positives to specific foods if there is a high level of total
allergen-specific antibodies -- if Max is strongly allergic to a few
things, this might lead the tests to suggest he is allergic to many
things. But we learned a couple weeks later that Max's total antibody
level is high (in the hundreds when it is typically in the tens), but
it is not over the threshold (in the thousands) for causing false
So Max gets 26 substances poked into his back for further skin testing
this morning. An assistant distracts him with a fantastical suitcase
full of toys. The goal is to find things he can eat, so he
doesn't get poked with things we're pretty sure he is allergic to:
eggs and cow's milk (based on earlier skin and blood tests), and peas
and bananas (based on puffy-face reactions to them). We wait 15
minutes to see which pokes cause swelling. Then we get good allergy
news for first time. Max shows only 3 swollen spots -- to the
histamine control (which must swell to verify the test is working),
soy mayonnaise (though his soy cheese and miso spots look fine, just
like the saline control), and peanuts. Everything else gets the green
light, including Max's formula (whew!), wheat (which opens up all
kinds of possibilities), and pectin to thicken his feeds (should we
ever brave that again, given that it was followed by green vomit and
surgery last time). Now we can proceed, cautiously, with a wider
range of foods.
I hadn't planned to include my breast milk, but Dr. Atkins surprises
us by asking for some. The test shows that it is safe too. Not
everyone needed to have it scraped into Max's back to know.
Fri Aug 31, 2007
Being told that my breast milk is safe is bittersweet. I'm in the
process of weaning.
Before Max, I would have thought this would be the end to the story.
If you're nursing your baby, at some point, you stop. Even
with Max, it's not clear to Randy why this isn't the end to the
story -- why I'm still "in the process of weaning" when I supposedly
decided weeks ago to have fully weaned by now. Why I'm so buffeted in
this decision with each bit of new information -- about Max's
allergies, his TPN schedule, or a colleague's weaning experience.
I can't explain it. But I think about how elated Max was when he
discovered he could crawl. How he would take off in any direction,
like we might if we discovered we could fly. We would struggle to
find words to describe the pleasure and awe in our discovery. We
would struggle to bring ourselves to stop.
The crazy thing is, it's not even Max I'm weaning. He weaned back in
July, when he lost his untethered window from his TPN nutrition along
with his appetite. I'm weaning an electric pump.
It's an exacting contraption of funnels and tubes, decidedly bovine.
Late in my pregnancy, I emailed a photo of my expanding self to a
friend, who replied, "Holy #*$%& moly!" Randy chimed in, "More like
holy #*$%& cow!" Little did he know.
I know how lucky I've been to nurse and nourish Max all this time.
And how lucky we are to even consider commemorating the end of this
era over croissants in Paris.
That makes saying good-bye to flying with Max a little easier. Just a
Wed Sep 5, 2007
Max will eat again. This is what his OT and home care nurse
tell us, and I'm trying hard to believe them. Max used to be such a
happy eater. When Christian's mom noted how nice and wide Max would
open his mouth for food, we thought nothing of it. But with his stoma
blockage and the ensuing months of not eating and periodically
vomiting, Max is now fighting our attempts to feed him. He will still
drink from a cup -- another skill from his Boston days -- but that's
As usual, we're not alone. Randy and I are following the pages of
aversions provided by another parent on the short gut wiki, along
with suggestions from OT Judy. We're making meals fun (focusing for
now on having Max play with food rather than eat it), providing oral
stimulation via toys and toothbrushes, and exaggerating our eating
motions and our resulting pleasure (an easy enough task the last few
days, over tasty meals with family members visiting from Cleveland and
Thu Sep 6, 2007
Paris may actually happen. I'm thinking we should start preparing.
Randy is looking at me like I'm talking about unicorns again. He
likes to point out that we packed for an indefinite stay in Boston in
a matter of hours -- all the time we had left after Max was discharged
from the hospital for an infection and broviac replacement surgery.
We'll be back in the hospital before this trip too, for a blood
transfusion next week (Max's hematocrit is low again) and possibly a
surgical consult (regarding some shifting in and out of his stoma).
For his part, Max seems ready to go go go. He toddles around most of
our block behind his walker this evening. He stops to point out his
favorite sights -- a barking dog halfway down the street, a plastic
play set around the corner, a water meter cover as we near home. And
of course, the trucks. He watches, mesmerized, as neighbor Keith
drives his skid
steer around his remodel. The spell is broken only when Keith
stops, loads Max in, and gives him a ride. The spell is very broken.
Skid steers are apparently best admired from afar, or at least from
We just might get to see if Max thinks the same of Parisians.
Sun Sep 9, 2007
The first time we moved up to Christian's 20-oz container for
mixing daily g-tube feeds, Max's liver measures stalled in Boston.
This weekend, we move up from our 10-oz bottles to our symbol of hope
for the second time. Then Max vomits on Randy early this morning.
It's just milk (nothing neon) and Max appears fine the rest of the
day, with a break from his continuous feeds. He has otherwise seemed
to be digesting well -- his input is going up while his output is
coming down. We'll cut back a bit and watch closely.
Mon Sep 10, 2007
So much for planning.
At the farmer's market Saturday, Max and I ran into colleagues who are
also heading to Paris shortly. When they asked where we'll be
staying, I realized I had no idea. Randy and I later discovered that
our apartment is some distance from the conference and the sights. It
had been booked for us, months ago, to allow us to be close to our
local host (who will accompany us on any hospital visits). But now
that the trip is upon us, we realize that being close to the
conference and sights makes more sense, for coordinating Max's daily
procedures with NP Kristin. A search on
vrbo.com (recommended by another
colleague who visited Paris this summer) yields a promising apartment
off the Seine, within walking distance of the Louvre, Notre Dame, and
the conference. And not far from the hospital, where Olivier Goulet
has received a heads-up about Max, in case anything happens.
(Dr. Goulet chairs a team that is pioneering explorations of large
intestine transplants, something that Max could look into down the
road. We're awed by his work, but hope that we won't be meeting him
any time soon.) The last-minute nature of our apartment reservation
gets us a 15 percent discount.
Good thing one of us is tactical.
Tue Sep 11, 2007
We would give anything for Max.
Today, Randy is finally able to give him blood. Nana spent a couple
years living in a remote part of Mexico back in the 60's, which
disqualified her and her subsequent children from donating blood, due
disease. None of them ever showed any signs of having it. (We
only learned of the disease when Randy tried to donate blood.) But if
you check the box for living in southern Mexico or the box for having
a mom who did, you are automatically ineligible -- until now. The US
has just begun testing blood donations for the disease, rather than
disqualifying potential donors. (Such testing has been mandatory in
countries where the disease is endemic.) Randy is negative, so his
blood gets pumped into Max for a couple hours this afternoon.
I still don't weigh enough to donate blood. Croissants should
Wed Sep 12, 2007
Our last trip to Europe, just before Max entered the picture, began
with a photo of my email in-box. It contained 6 messages -- a record
low following a vacation-prep cleaning frenzy. Now it is at a
reasonable 100. Many of the messages are well-wishes for Max and our
I'm still trying to not get too attached to the idea of being in Paris
tomorrow. Max is helping, by pulling stunts like spiking a fever
during his hospital check-in yesterday, then vomiting up his tylenol.
But again, there was no neon, and his temperature normalized quickly
and has been rock solid since. Blood cultures were taken just in
case. They are testing negative for infection, and his CRP is normal.
If the trip happens, we'll appreciate it all the more.
It's not all bad, the in-box never being empty.
Fri Sep 14, 2007
It's all worth it, as soon as we reach the heart of the city in our
cab from Charles de Gaulle.
The rest doesn't matter. Like my sprint through endless rows of
long-term airport parking back in Denver to retrieve Max's forgotten
carseat. Or how long and hard Max fights sleep on each flight. Or
now, as our flamboyant nasalizing of the French language leads our cab
driver to head not to our apartment on Rue Seguier, but to the distant
We eventually find ourselves winding past the boutique shops and cafes
lining the narrow streets to our place on the Seine, just south of Ile
de la Cite. A private courtyard separates the residence from the
surrounding bustle. Max cruises the spacious apartment, inspecting
the monkeys and birds on the elaborately decorated linen-covered
walls. It also doesn't matter that our last-minute lodging switch
means that we must move out to a hotel for our last night.
We're here. It's perfect.
Sat Sep 15, 2007
The Paris skeptic -- the one who suggested that this trip was for
Randy and me and we should leave Max in Boulder -- claimed that kids
don't know Germany from Gymboree.
It's true that a highlight of the trip for Max so far is the matchbox
cars brought to dinner tonight by the 2.5 year-old son of friends.
But he also claps as we stroll around Notre Dame, the Pompidou, and
St. Sulpice. We've never appreciated the Seine quite like we do when
Max points to it and signs "water." And the four flights of stairs
spiraling up to our apartment would just be exhausting at day's end,
but Max makes them fun, pointing upward to encourage us throughout the
Yes, this trip is for Randy and me. That's why we brought Max.
Mon Sep 17, 2007
To prepare for this trip, Randy and Nana and I spoke strictly in
French over dinner last month. Then we watched a depressing French
film. Our conversation was remarkably fluid, considering that only
Nana really speaks the language. But I learned the next day that
entire topics had been covered without me knowing. The same was
probably true of the film, even with subtitles. This turns out to be
great preparation for Paris.
Some of our confusions are harmless enough -- like washing our laundry
load four times, without detergent, and finally hanging it to dry
because we can't decipher the combination washer-dryer in the
apartment. Other confusions are decidedly more awkward -- like not
knowing how to approach the locked entry to our courtyard when a man
is urinating on it. The proper etiquette is apparently not to
proceed as if he weren't there. Our colleague Linda Smith tries this
strategy when visiting us this evening. I can't figure out how to
buzz her in, so I spiral my way down while Linda endures indignant
bursts of "Madame! Madame! Attention!" -- as if she had stepped on
the man's dinner of snails rather than discovering him peeing on our
We take a cab back from a party near Montmartre tonight, at the
apartment of one of the conference organizers. I think we do a
commendable job in our broken French, asking the driver to first drop
Randy and me off at our apartment, and to then take Linda and
colleague Karen Adolph to their hotel. But the driver suddenly stops
and orders us out of the cab. We try to explain that this is not what
we are requesting, that we aren't at either destination. But he just
points to his meter and gestures adamantly for us to go. We stand in
the rain, abandoned, trying to orient ourselves.
Part of what made the French film and our conversation with Nana so
entertaining was not quite knowing what was going on. There's plenty
of that kind of fun to be had in Paris.
Tue Sep 18, 2007
Today is the third and final day of the conference. The robotics
researchers running the show have provided a fresh perspective on our
work. I'm used to talking about how kids think, not why you would
want to design them that way.
I've heard the developmentalists at this meeting speak many times, but
not with the new perspective from Max. Karen Adolph presents
meticulous data documenting that toddlers fall an average of 90 times
per day. It's part of their natural course of motor learning. Max
doesn't come anywhere close. Annette Karmiloff-Smith describes how
the environment can exert subtle but pervasive influences on otherwise
genetic disorders -- for example, with parents unknowingly changing
how they treat a child upon learning that the child has special needs.
I think about how we need to hover around Max when he is tethered to
his pumps. It means we're there to catch his falls.
Randy and I jump for joy seeing Max at the end of each day, when
Kristin brings him to the conference center. Our days apart seem
long, especially after discussing his condition with friends here.
They have been following his story, so they know about the ups as well
as the downs. But what feels grueling in the abstract always feels
more manageable when we're with Max, even (or especially?) when he is
pushing me away so that he can wander untethered through the crowds of
French students. I know he's happy to see me too though. Having
learned this end-of-day routine, he talks about "mama" with Kristin
all the way to the conference site. Now that's a good way to design a
Wed Sep 19, 2007
It turns out that I'm allergic to eggs or milk. Kristin asks how I
could have possibly not known this until now. A couple days ago,
Max's face turned red and puffy immediately after it was wiped with a
napkin that must have touched some cheese. His reaction was easily
controlled with Benadryl, but it was quite obvious. My reaction is
more subtle -- my legs itch. But they always have. And I've always
had eggs and milk in my diet, except for the last four months. I
didn't notice that my legs stopped itching, perhaps in the same way
that I never think to look at my throat when it's not sore. But the
return of itching is more abrupt, with my sudden consumption of
croissants, crepes, chocolat, and all things cheese. They're easily
worth it, but I had no idea. It's like discovering that drinking
water affects your temperament -- this would be shocking, having
accepted both as givens.
I'm not the only one suddenly consuming. Maybe it's all the genuine
"mmmmm" sounds we've been making during our meals here, but Max has
become increasingly interested in his Cheerios the last few days.
This afternoon, he moves on to try everything we are snacking on in
the apartment -- potato chips, apples, proscuitto. He seems delighted
to be eating again.
Like mother, like son.
Thu Sep 20, 2007
Pushing a kid around in a stroller doesn't seem like a great way to
meet guys. But Max doesn't stop a crepes guy from telling Kristin how
beautiful she is and throwing in free samples with her order. When I
join them to place an order the next day, the guy gives me a discount
and gestures toward Kristin by way of explanation.
We move to a hotel just north of the Louvre for our last day in Paris.
Randy and Kristin cram into a taxi with all our luggage. (Thankfully,
this driver is not inclined to abandon his passengers, no matter how
bad their French, halfway to their destination.) Max and I make the
move by strolling across the pedestrian bridge over the Seine.
It's the eye of a businessman that Kristin catches here. He talks her
up for several hours in cafes this evening.
Little do these guys know how Kristin has made this trip come true for
us. There are the obvious ways, like taking care of Max for three
days straight during our conference, and facing the daunting tasks of
single-handed bathroom stops and Max's cares on the streets of Paris.
(The long spiral staircase means not returning home until day's end.)
Another obvious gift is date night, which Randy and I enjoyed
yesterday over a classic French dinner at Allard, an intimate
restaurant near our apartment.
But the smaller gifts are what make the trip seamless. Like rising
early today to bring in delicious pastries and the rare find of
Parisian coffee to-go, so that we can fortify ourselves while packing
Max's things for the move. Like filling us in on the moments we're
missing with Max, such as when he stares at a man while riding a boat
bus on the Seine. Max alternates between pointing to his nose and
pointing at the man's face. Kristin tries to discreetly confirm that
yes, the man has a large nose, while moving Max on to other topics.
Like carting whatever needs to be carted, to get Max and his equipment
up and down however many stairs we face.
Without Kristin, this trip wouldn't have been possible, let alone so
Fri Sep 21, 2007
On our drive home from the Denver airport, Max's pumps beep. They
flash "infusion complete," signaling that 20 hours have passed since
we left our hotel in Paris.
We're fantasizing about sleep, but also about our next trips. We
can't get over how perfect this one was. Kristin asks about our
favorite moments. Hers came upon seeing her reflection with Max in a
shop window, with the city spilling out behind them. Randy had a
similar Max-is-in-Paris! epiphany, sitting with him on the steps of
the Pantheon the day after the conference. I don't have one highlight
like this to single out -- just lots of images of wandering without
any particular destination, wherever the sights and sounds and smells
led us. To eclairs after the Jardin du Luxembourg, where the toy
sailboat Randy rents "for Max" reminds me of Toshio's puzzled
reactions to Randy's repeated gifts of model airplanes. To ramen in
Japantown, where the waitress holds Max while Randy and I slurp,
before we wander over to the Opera House. To the frenzy of kick
scooters and ball-chasers in the kid-fest that we stumble upon outside
the Palais Royal, just before Max goes to sleep for his last night in
Fuzzy and Neko linger and meow for our attention when we return to
Boulder. But we focus on setting up Max's next round of pumps before
collapsing into bed, trying to hold onto what we can from a trip that
already feels like a dream.
Tue Sep 25, 2007
I never liked beer, until the last week of a trip to Japan in 1999. I
spent the first week complaining about the slow refills on the tiny
water glasses served in restaurants, the second week giving in to the
rapidly-filled beer orders, and the third week actually enjoying the
results of those orders. Max had a similar reaction to the French
He seemed oblivious to jet lag on this trip, sleeping 14 hours on the
nights soon after the transitions in both directions, followed by
mostly 12-hour nights. But after his second day in Paris, he spent a
couple hours in the middle of the night systematically rehearsing all
of his familiar sounds: MA MA MA MA DOU DOU DA DA DA NA NA. He was
emphatic, as if to insist "No, these are the sounds." But he
didn't complain again, and seemed to accept his fate over the next few
days. By the end of the trip, Randy and I could swear he was trying
to speak French, drawling his nasalized vowels.
My taste for beer has lasted all these years, and has extended beyond
Japanese lagers. Now we can imagine seeing whether the same holds
true for Max and languages.
Thu Sep 27, 2007
Max's word confusions are at least as endearing as his words.
"Wheel" is his new sign for today -- index fingers spinning away from
the body. Trucks and truck parts seem pretty straightforward.
Homophones are trickier. A couple days ago, Max and I made a game of
looking in his room for the animals in his book "Bear Wants More."
Bear was easy. Lots to choose from -- we selected the brown teddy
that the Denver GI team gave Max when they welcomed him back from
Boston. Mouse was harder, but we found one on a set of Max's pajamas.
Hare seemed impossible. I was ready to give up after rummaging
through Max's toy bins and closet, but turned to find him patting his
head as if to say, "Hair is right here, mama."
Max has also been making a game of going right up to our bedroom door
in the mornings, then turning at the last second as I remind him to
let Randy sleep. He recently started pointing to his nose while
approaching the door. I was puzzled, until I later saw Max teasing
Randy by talking all about Mama, while poking Randy's arm. Randy,
unamused, repeatedly pointed to his nose and said "Dada."
A parent by any other name is not as sweet!
Fri Sep 28, 2007
I just want to pick Max up, first thing, when I enter his room. I
feel it particularly strongly this morning. But today, like every
day, we wait through all the necessary steps that must happen first.
I clean my hands, clamp the tubing from last night's dose of Omegaven,
and disconnect it from the broviac leading from his thigh to his
heart. I remove the Omegaven tubing from its pump, detach the
Omegaven bottle from the IV backpack, and discard the night's
supplies. I talk with Max about how Omegaven has saved his life.
Yep, every day. I detach the power supply from the Omegaven and TPN
pumps (the TPN pump runs on batteries during the day), and remove the
Omegaven pump from the backpack. I replace the ice pack in the food
backpack, unplug the food pump, and stick the food backpack in the IV
backpack. That's it for pumps.
Then I change the dressings that keep his skin clean around his g-tube
and fistula, and empty and prep his ostomy bag. Max plays with toys
in his crib while I go through all these steps. If he starts to get
impatient, I can usually distract him by singing. I change his
diaper. I marvel at the idea that this last step is the only step for
typical kids. Then I get to pick Max up, and hug and kiss him
until he squirms away to start the day's explorations.
Randy must feel this longing also, to just play with Max before
tuck-in time, instead of priming tubes for the next round of sterile
hookups, changing dressings, and managing the bag.
The other daily medical procedures don't feel as intrusive. I inject
additives into the TPN bag, mix the feeds, and set up the food pump --
all at times when I wouldn't otherwise be playing with Max. And it's
a celebration every afternoon when Randy draws up syringes of saline
and heparin to flush Max's broviac, because this step starts Max's
Like so many families, we've adjusted to short gut life. These
procedures feel routine, and only take about half an hour from each of
our days. The less frequent procedures (like changing the broviac
dressing once a week) don't add that much more time. There is always
the threat of something more, from unplanned bag changes (15 minutes)
to emergency broviac repairs (4 hours), from blood transfusions (6
hours) to bacterial infections that confine us to the inn for days to
weeks. But we know we have so much to be grateful for. Max can
vacation in Paris! And more kids are being saved by Omegaven. A
10-month-old boy is heading to Boston from Kentucky, thanks to the
short gut wiki. His
mom says she feels like she has been watching a movie (through our
blogs), and soon will be starring in it. A second baby is now on
Omegaven in Colorado. Our pharmacist thanks us today for paving the
way for him.
Life is incredibly good. But I would still love to just pick Max up,
Sun Sep 30, 2007
Max goes to the zoo with Dad while I catch up on work. He zooms
around with his walker, enjoying his first chance to control the show
and pick the sights that interest him. It isn't the peacock that he
comes within inches of. He zooms right by. It isn't the tigers,
either. He splays his hands out from his mouth to sign for them, but
quickly moves on. He zips in and out of the giraffe house with barely
a glance upward. Randy's coaxing is less than ineffective. When Max
finally finds a place worth lingering in, Randy takes a photo with his
cell phone. I open my email to see Max happily wandering around golf
carts in a service area.
If Randy really wants Max to play the guitar some day, I think he
should keep it a secret.
Tue Oct 2, 2007
We should focus on shorter hikes with Max. This is Randy's conclusion
tonight. Not that today's hike was all that long. We were away from
our house for just over an hour, which in Boulder is enough time to
feel like you're getting away from it all.
But a shorter hike would mean a simpler exit strategy when Max gets
fussy. Watching his parents point out the glorious fall colors just
doesn't cut it.
A shorter hike would also mean an easier sprint back to the car for
Benadryl when Max's face puffs out in a bright red allergic reaction.
This happens a few minutes after he sips from our shared water bottle
-- was there a trace of banana somewhere? It's probably more relevant
that this happens 10 minutes after a dog on the trail plants slobbery
kisses on a stunned but compliant Max, all around the area that is now
puffed out. Max tested negative for dog allergies back in May, but
maybe his situation has changed. Or maybe the dog had eaten eggs.
In any case, shorter hikes seem like a good idea -- and Benadryl in
the hiking backpack.
Fri Oct 5, 2007
memories for significant events are apparently less accurate than
I feel like I remember everything about the day we first brought Max
home, one year ago. Like how frazzled the family in the infant care
unit next to us seemed -- they too were checking their baby out after
months in the hospital, and were facing a long drive home to Nebraska
to boot. How giddy Randy and I felt, putting Max in the car and
driving away. Away! How unimpressed Max was with everything we
eagerly showed him -- our yard, his room, the cats. How big his
cheeks were. How sweet he smelled. How we savored our one glorious
hour at home with him, before the home health care team descended for
several hours of training on pumps and needles. (Then I understood
why our hospital neighbors had looked the way they did. They had
received this training just before we said good-bye.) It's hard to
imagine the memories from this day fading.
Nanny Kate's cousin, Kai, comes over for a visit this afternoon. He
is 4 months old, like Max was when we brought him home. There is much
to take in, like how adorable Kai is and how Max is a bit shy with
him. But what I can't get over is how Kai doesn't motor around. He
doesn't sit on his own. He is held, and he lays down. I had
forgotten. It feels weird, bordering on absurd, to think that Max was
once like this. It isn't part of my flashbulb memory.
Sun Oct 7, 2007
When Max sees other kids running around, I wonder if he assumes they
are in their untethered windows. I try not to worry about how he will
react when he eventually understands his condition.
He fails the mirror
test of self-recognition this afternoon, for the third time.
Granted, he isn't supposed to pass this test -- by reaching for the
star we put on his forehead -- for at least a few more months. But
that hasn't stopped us from periodically putting stickers and dabs of
cream on his face and marching him in front of a mirror. It's just
too fun. The first time, at 11 months, Max reached for the mirror.
The second time, at 14 months, he pointed to his reflection. Today,
he pats his head. He fixates the star. He pokes his ear. He does
nothing that could be generously interpreted as reaching for the star.
Randy decides that the test is flawed.
Max has been enjoying a precious hand-quilted book of photos, one from
each of his months, sent by our colleague Karen after she met Max in
Paris. But when he first came upon the 8-month photo, he started
bawling -- real tears, very agitated. I distracted him for a while,
but he kept pointing for the book. When I returned it to him, he
flipped through it and started bawling again. That photo was taken by
our friend Earl back in Boston, at the peak of Max's bilirubin
levels, his face moulting. I don't know if he was upset because he
recognized himself and that time. Whatever the reason, he now looks
at the photos quite contentedly.
He also spends time looking at the pages that remain to be filled.
"Me too," I tell him.
Fri Oct 12, 2007
Randy cut the umbilical cord, Jeff Kerr-Layton proclaimed to Max,
"You're free! You're free!"
On Tuesday, Max's regular hospital visit confirmed what we suspected.
After months of not registering on the growth charts while we focused
first on saving his liver and then on managing his stoma blockage, he
is now catching up -- 30th percentile for weight, 93rd percentile for
head circumference. This means that we get to expand his untethered
window from 4 hours to 6. We start this afternoon.
Tuesday also brought orders from PT Betsy to hide Max's walkers.
(When she broke the news to me, I let her know that she would need to
be firm with Randy.) Max has loved zooming around the house and
neighborhood with them. But sure enough, take them away, and he is
suddenly interested in trying to walk more independently. He weaned
quickly from needing us to hold both of his hands to offering just
one. Christian's mom reminds me that it won't be long before Max is
pushing our hands away.
Sat Oct 13, 2007
Max giggles in his sleep tonight.
He seems endlessly happy these days, and just plain thrilled with
Randy and me. It's like he can't believe how funny and clever and
exciting we are. Yesterday, I engaged him in a one-way pillow fight.
Hilarious. Today, I combine two toys from when Max was born, hiding a
screeching monkey from Ken and Anna in a toy box from colleague Adele,
and tying the box shut. Fascinating. Even when I put my head down on
his plush bear chair and shut my eyes, he doesn't seem to want to be
anywhere but right here, balancing stuffed animals on my head.
Randy entertains us all, remotely. A couple days ago, he kept talking
about a special shopping trip that he and Max needed to take, without
me. I was touched that he would plan for my birthday more than a week
in advance. But what he came home with was a remote control
helicopter. He explained that Max just wasn't satisfied with the
cars, or the blimp. Or the other helicopter, for that matter.
Even after the toys are put away, Randy has Max squealing all the way
through tuck-ins. The giggles that carry over into his dreams could
be about almost anything. We feel like such rock stars, the loves of
Max's life. He just can't get enough of us. I see why some dog
owners don't understand the point of cats, and why parents sometimes
wish their kids would never grow up.
Fri Oct 19, 2007
Happy Birthday Yuko!!!!
Given that she's been so busy with writing a renewal of the major grant that
funds her lab's research (hence the reduced frequency of postings of late),
this is Randy taking an opportunity to guest-write a special entry for
Yuko really is all that funny and clever (and the love of our lives for both
Max and me) -- Max is deeply insightful and does not actually give his giggles
that indiscriminately! She is incredibly creative in coming up with fun games
to play, often after not all that much sleep, and I always delight in hearing
the fun activities and new signs that she has taught Max in the morning while
I'm still seleeping. She keeps a log of the things he's signed -- I think it
is around 30, and she's responsible for all of them. Not that I'm not looking
out for Max's education, but I do tend to focus more on the mechanical and
aeronautical aspects of his training. In short, Max would be more of a
grunting geek if it weren't for Yuko. I think the same can be said for me
While I have the opportunity to laud Yuko on her special day, I also just want
to add my deepest appreciation for her writing this blog, and communicating so
regularly with all the other short gut families out there (and everyone else
that "we" keep in touch with!). She really cares so much about all the kids,
and these emails and blogs are critical for helping people get through the
challenges that come up -- it is truly amazing that she can do all this while
running her huge lab so successfully! Thanks to the efforts of Yuko and
several other short gut families, information on Omegaven, and all the stories
of hope and success in overcoming these challenges, are now prominently
located on the first page of various common Google searches. This is really
making a difference and helping to save lives!
Now this is where Yuko would have some clever thing that sums everything up,
and makes some deep insightful point. All I can say is, I'm not that clever.
But this can be a good thing, like the point that Yuko makes when watching the
Olympics: they should have some regular folks trying to do that stuff to
provide contrast, so you can really appreciate how amazing the atheletes are
(otherwise you tend to just habituate and quickly lose the awe that we should
really have). I guess that is a pretty important point about life and marriage
and family: it is too easy to take people for granted, and a birthday is a great
opportunity to say how much you love and appreciate them! I Love you Yuko!!!
Tue Oct 23, 2007
We've been reassuring everyone that we will share the news when Max
starts walking. But maybe we didn't.
We said good-bye to Nana and Grandpa Dick yesterday, after a fun visit
together with Aunt Katie starting last week. I later described some
of Max's adventures with Randy's family to my family. I was surprised
when they responded excitedly with the idea that Max is walking.
We don't really think of it as walking -- more like lunging. He began
Sunday. Once we got him started walking with minimal support, he
would then take 3-4 steps on his own and fall to his knees.
Yesterday, he would take 3-4 steps on his own and either fall to his
knees, or kneel down in a more controlled way. Today it's 5 steps.
Progress, but his downward trajectory looks so inevitable after our
wind-up that he seems like a walking boy only in the sense that Buzz
Lightyear is a flying toy.
Whatever it is that he's doing, he giggles the whole way through.
Sat Oct 27, 2007
Randy thinks we are living in a state of blissful ignorance.
Blissful is right. When Randy's family was here, Max moved on from
giggling to guffawing, as he threw and chased down toys with Aunt
Katie and Nana. When I apologized to Grandpa Dick for being so
unsociable (working on my grant proposal), he said he felt like he
should do the same. The three boys got in an awful lot of quality
helicopter time together.
Nothing feels pressing with Max's health right now. We're still
meticulous with our daily sterile procedures. But we're not thinking
about additional major surgeries -- whether transplant or
intestine-lengthening procedures -- that most people assume Max will
need down the road to be able to come off of his IV nutrition. We're
just enjoying life day to day, as Max gradually seems to do a little
more with the intestine he's got.
Dr. Puder thinks Max won't need more surgeries. He hasn't been wrong
yet. In any case, we'll likely be in wait-and-see mode for months to
years to life. I think this bliss is brilliant.
Wed Oct 31, 2007
I hadn't realized how tricky today could be. But Halloween survival
strategies have been a focus of discussion on one of the short gut
mailing lists. Most of these kids can't handle sugar because it pulls
too much water into the intestine (which would normally get reabsorbed
by an intact colon), leading to fluid loss. Now we're armed with
ideas for when the time comes: exchanging Max's candy for stickers or
money, or arranging for Max to receive tokens (like pens or toys)
instead of candy, or reverse trick-or-treating with Max distributing
candy as we go door-to-door.
For now, Max seems a little unsure about his pumpkin garb, but no more
so than our neighbor John in his elaborate Austin Powers get-up. His
kids (a 5-year-old Zorro and a 3-year-old chicken) have recently been
directing their sibling rivalry at Max. Whenever we walk by their
house, they start bringing toys out for Max, each watching his
reaction to the other's toy, then running into the house to find a
better offering. Max has started making a beeline for their front
porch as soon as he sees it. Cameron and Allison show Max the
trick-or-treating ropes tonight. His favorite part is carefully
selecting his candy from each basket, then returning it. He's good
for 4 houses of that, then ready for bed. This is one Halloween more
Thu Nov 1, 2007
This does get easier with time -- that's what I think as I scrub Max's
blood from the floor this morning -- even if it's a little different
each time. Today's twist (literally) seems to be a loose connection
on the splitter attachment for Max's broviac. The splitter allows us
to pump Omegaven and TPN at the same time, and it gets changed out
with the pump tubing each afternoon.
Max was standing at his bedroom door, ready to start the day, as I
snapped his pants. I felt a drip on my hand, but it took another snap
or two for me to realize how wrong this was. I checked for the
source, found the dripping blood, and discovered that one part of the
splitter had twisted off from the rest, leaving an open route to Max's
heart. I clamped the line, then woke Randy. Even as these emergency
clampings become more routine, they are still too serious for us to
not check in with each other about them. And after Randy disconnected
the remainder of the splitter and flushed the broviac line with saline
and heparin, he transitioned right back to sleep anyway. Max didn't
seem to notice a thing, other than the pleasant surprise of seeing
Daddy so early in the morning.
We always check the connections on the tubing, so we have no idea how
the splitter came apart. The big fear is something like this
happening while we're sleeping. But from what we can tell (from our
experience and others'), that doesn't seem to happen.
one time I walked in to find Max lying in his blood, he had pulled
open a port on his Omegaven tubing while I thought he was sleeping.
Now we use portless tubing, and the video monitor lets us see what he
is doing. Max was up and about for
other two breaks (in one case
Randy was actually flushing the broviac). So our theory, and
hope, is that although the mystery breaks seem to happen without
warning or cause, they require Max to be up (perhaps with sufficient
blood pressure to break through a weak spot in the tubing), or for us
to be doing something with the line. We can always be up when he's
up. We can hope that things keep getting easier.
Tue Nov 6, 2007
Someday Max will forgive me for comparing him to snowboarding.
He's walking! Maybe he has been for a couple weeks, but today is the
day that Randy and I turn to each other and say it. It's not that
he's traveling any further today than he has before. He made it all
the way across Cameron and Allison's expansive front porch a week ago,
and across our back patio the day before that. Today he's just
traversing the kitchen. But he's suddenly got the walking attitude.
No more wind-ups from us. He sets out on his own, clapping for
himself at the start of each lap, getting us to do the same.
The sheer joy this brings -- not just for Max, but for Randy and me --
reminds me of when I started snowboarding. I couldn't believe that
anything could be so fun (once I got past the first days of bruises
and whiplash with Pittsburgh Kenny and colleague Jon). That's how I feel with each
step that Max takes. I'm counting on him to hit the slopes someday,
and to forgive me not too long after that.
Thu Nov 8, 2007
Toshio once watched Randy and me drawing up syringes, his eyes opening
wide at the sight of the needles. I explained that the needles go
into Max's food and into his tubing, so they don't hurt him at all.
We've been quick to point out that Max's routine procedures are
Not now. His hematocrit has always dropped steadily after brief
surges with blood transfusions, so we're trying something new: epogen.
This is a synthetic protein made to stimulate the bone marrow to
produce red blood cells. (It's also a substance used by endurance
athletes to increase the oxygen-carrying capacity of the blood. Yep,
Max is doping.)
The production of red blood cells seems like the bottleneck in Max's
system, because his iron supply for making these cells is fine. From
what we understand, red blood cell production is normally stimulated
by a protein (erythropoietin) secreted by the liver early in
development (and by the kidneys later). The fact that Max's
erythropoietin is low may indicate that his liver is still in the
midst of its long healing process. His bilirubin levels have been
normal for some time, but other liver measures indicate continued
progress -- his albumin (protein) levels normalized only as of his
last set of labs, and his ALT and AST enzyme levels (usually the last
to normalize as Omegaven does its thing) continue to improve. In the
meantime, we can provide epogen to try to up his hematocrit.
Unfortunately, to be most effective, the epogen must be given
subcutaneously, as a shot -- 3 times a week, for 4 weeks. Randy is
probably right that the shots are worse for us than for Max. When he
felt the first shot last Friday, he looked so utterly betrayed that I
was shaken for hours. But he recovers within seconds when the shots
are given correctly (like last Friday and this morning, when Nurse
Gail did them). He is even fine within a couple minutes when the
shots are done badly (like Monday, when Randy and I had to try it on
our own, and our inability to keep Max still led to the needle popping
out, being reinserted, and then "sawing Max's leg" while he struggled,
as Randy put it later). I'm not sure the topical anesthestic was up
to that task.
We have 9 more tries to get this procedure right. Max's blood work,
and the extent to which he continues to forgive and forget, will let
us know if they're worth it.
Mon Nov 12, 2007
We didn't want to discover the answer to this question, but now we're
glad to have it: What happens if Max's tubing breaks and he starts
losing blood in the middle of the night?
The answer, at least as it happens this morning, is that it smells
like blood when I enter his room. His sheets don't look that much
worse than his previous bloody sheets incident, but as I fiddle with
his pajamas to access his broviac, I find that they are soaked, as is
the bottom of his onesie. The video monitor showed only a small dark
spot (Max was lying over the rest) -- the kind of thing I've seen and
worried about before but that has turned out to be a blanket or
stuffed animal or wrinkle. Not today.
I call out to Randy. He staggers in to see Max standing in his crib,
talking. I have just accessed his broviac and clamped it. Randy
points out the disconnected TPN tubing end, which is just sitting in
Max's crib, pumping TPN onto his sheets instead of into him. The
tubing came apart at the Y-splitter connection, at the same point as
11 days ago, once again leaving an open route to Max's heart -- except
this time, instead of being caught almost immediately, at least 4.5
hours have passed.
Randy disconnects the remaining part of the splitter from Max's
broviac. He finds that it has clotted off with blood. That's good to
know -- that what can happen with an open route to the heart in the
middle of the night is the body naturally stemming the flow and loss
of blood. Despite the clotting, Randy is able to flush the broviac
with saline (which normally pushes through the last of the TPN to Max,
but in this case pushes his blood back), followed by heparin (which
prevents blood from clotting in the broviac). The broviac is still
We're overwhelmed. There's a lot of blood, and the smell is
nauseating. So is our analysis of what happened. I primed the tubing
last night. I never prime the tubing. This is Randy's job, which I
trained on briefly in Boston, but we then returned quickly to our
specializations. (Randy has never injected the additives into the TPN
bag.) But now I'm eager again for each of us to know all the
procedures. I had checked the connectors on the splitter last night
and they seemed tight, but this morning I discover that the
still-intact side (for the Omegaven) can in fact be tightened further.
Presumably, the same was true for the side that came unscrewed. I
can't believe it. This feels like the worst mistake of my life.
Randy has his own issues. We know the line was broken since at least
3:30 this morning, because Randy remembers feeling something wet on
his clothes after burping Max then. He figured it was spit-up. But
when he goes back to check his clothes, he finds that it was blood.
He agonizes over not catching the problem 4.5 hours ago. But he's
crazy. I know how the fact of dripping blood can take a while to sink
in -- even when you're perfectly alert, let alone woken in the middle
of the night. We're doing the best we can. He shouldn't be so hard
on himself. I think I manage to convince him, and in the process
comfort myself about my own error.
There is good news here. What seemed like a scary and mysterious
event is likely preventable, with aggressive tightening of
connections. (We had been cautioned against over-tightening, which
can cause cracking, but that's a lesser risk and one we can check
for.) And we've faced the horrible unknown of bleeding in the night,
Max has more than survived. We'll watch him closely for any signs of
infection or low blood levels (lethargy, irritability) -- it can
apparently take a day for the system to stabilize after an acute loss
of blood. For now, he's unchanged as far as we (and our kitties) can
tell, quickly back to pursuing them, calling after Fuzzy, "Fuh. Ee.
Fuh. Ee," and practically running for one leg of the chase.
Wed Nov 14, 2007
At least one of us is doing just fine.
Max is acting like nothing happened 2 days ago. He's chasing kitties,
pointing out the moon ("mmmmmmuh") in all of his books, and rolling
around with us squealing in the mosh pit.
Randy's stress levels seem to have normalized, after skyrocketing the
moment he walked into Max's room. Mine went in the opposite direction
-- oddly calm and focused through the event, a wreck 40 hours later.
Randy's cousin Corrie points out that there are advantages to
asynchronous stress schedules. We'll still try to get on Max's.
Sat Nov 17, 2007
Paris was one of our best weeks. This was one of our worst.
Monday morning's loss of blood probably would have been enough. That
evening, we discovered that Max had yanked his broviac from its
insertion point on his skin. Yesterday, we discovered blood in his
stool and in his stomach. Today, the tip of his broviac springs a
leak of blood.
Max's lifeline was sutured into his skin, but the sutures are now a cm
or so away from the skin. This is a terrifying centimeter, but
apparently an acceptable one. The real work of stabilizing the
broviac is done by a cuff buried under his skin, which his tissues
have grown into. We still can't see the cuff, which is good, and
there is a bit of distance from the ideal placement of the broviac tip
near Max's heart to more peripheral locations where TPN can damage the
vein. We are reassured of these facts by our home health care
company, the on-call GI doc, and (probably most effectively) by Ellie
and Christian's moms, who have been here. Max's broviac is normally
protected from any tugging pressure on the insertion site by a
fortress of dressings and tape, but he seems to have managed to get
hold of a loop of line that is normally tucked away. We can increase
our vigilance around the fortress.
To assess the blood in Max's stool and stomach yesterday, we were
instructed to insert a syringe of saline into his stomach through his
g-tube, and then pull back on the syringe. Our first attempt yielded
more blood. Our second attempt 10 minutes later was clear, as were
the third and fourth attempts across the afternoon. The blood out the
stoma had also stopped by day's end. We don't know what caused this
incident, but Max's doctors do not seem concerned. Routine labs get
ordered to confirm that he is not losing significant amounts of
We had predicted that Max's broviac tip would break around Halloween,
based on it breaking
the same point 16 weeks ago
14 weeks before that. Today turns out to be a much better day for
it, since it happens right after Nurse Gail draws his blood for labs,
while she is flushing his line with heparin. Our previous breaks have
meant a trip to Children's and hours of nervous delay between break
and repair. We decide to proceed with the repair ourselves, since
Gail is here, we have a repair kit that we prepped for Paris, and
we're happy to avoid long waits in the ER surrounded by hospital-grade
germs. Randy calls out instructions while immobilizing Max's legs,
Gail conducts the delicate repair, and I entertain Max while holding
down his arms. We're done in 5 minutes. Nurse Gail indicates that
our broviac fortress system looks good and these lines shouldn't be
breaking. (We know that this tip was still secured when we discovered
that the other end had been yanked on Monday.) We will look into
other product options.
Paris opened up our world -- providing experiences we never would have
thought possible, with no hospitalizations required. I guess the same
could be said for this week. But I don't think we'll reminisce about
it in quite the same way.
Sun Nov 18, 2007
Max's labs show that his hematocrit is the same was it was 10 days ago
-- a huge relief. The nauseating, pajama-drenching loss of blood may
have involved less volume than it seemed. And, the
epogen doping may be working. Knowing this will help us get
through the remaining 5 shots. We have gotten much better at giving
them. Max fusses and squirms when the numbing cream is applied 45
minutes before the shot, and when his skin is wiped with an alcohol
pad just before. But he recovers within seconds of receiving the
shot, and doesn't seem to hold a grudge.
Mon Nov 19, 2007
We've been wondering what will happen when Max catches Fuzzy.
Apparently, so have they.
For months, Fuzzy has been coming in close to bait Max, darting right
by him even as she ostensibly tries to escape his endearingly
unsuccessful pursuits. Tonight, her curiosity gets the better of her.
She waits until Max gets within arm's reach, and then she just stands
there (or lies there, in another instance), waiting. Max freezes
Several seconds pass as they size one another up, each completely
still -- another Quentin Tarantino
moment. Max finally breaks the tension by flinching. It wouldn't
have worked in Reservoir Dogs, but today it's enough for Fuzzy, who
trots off both times.
I suspect that we won't be wondering much longer.
Tue Nov 20, 2007
There's a good reason misery loves company.
Not that the network of short gut and TPN families is miserable. But
they've all had their moments, like us, and Max is now the
beneficiary. We should be able to avoid a repeat of last Monday's
bloody incident. The first step is to tape all connections, which
other families started doing after their own bloody incidents.
Another tip is to use products with check valves that prevent back
leaking, which we hadn't heard of and are looking into. We updated
gut wiki with a consolidated list of tips we received for preventing
and addressing leaking lines, including the apparently untested
idea from Eliana of using a bedwetting mattress sensor alarm as a
backup check for moisture. We're looking into this too.
Misery loves company not just for its knowledge, but also its
reassurance. It turns out that many families have experienced an
incident like ours, even while in the hospital or under 24-hour
nursing at home. They are quick to encourage us to not beat ourselves
up about this. We are all living and learning, and thankfully there
are good solutions. The many efforts to
increase the visibility of the short gut wiki should help get the
word out to make this process easier for other families.
We're grateful to be in such good company.
Thu Nov 22, 2007
We are thankful for the little things.
Max now points to himself while happily flipping through his
quilted photo album.
He adores the moon. I couldn't figure out why he was saying "mmmuh"
the other day, but then he pointed to one tiny square of a quilt in
the book we were reading. It was a busy, where's-Waldo-esque page,
but sure enough, there was the mmmuh.
He loves Monkey. If he falls and starts crying, we can just say
"Where's Monkey?" and he'll excitedly pick himself up and wander off
for the search. Randy had initially worried that Max would become
attached to his chicken, or some other similarly uncool animal. Then
we eventually gave up on the idea of him forming an object of
attachment. Monkey has in fact been around since
we left for Pittsburgh -- a sendoff gift from Nurse Becky. But he
became the chosen one only after extensive playing with Randy's family
during their recent visit. Given all the time that Randy spent in
trees in his gorilla suit as a kid, I think he approves.
Max can often barely contain his excitement. When I held him up to
his window to see the first real snow of the season yesterday, he
looked at me with his mouth formed into a puckered O. He turned back
to the snow, and brought his hands in like he was about to clap. But
he stopped short and just shook his hands in and out, like he was
playing air cymbals.
Max gets to spend Thanksgiving today with his great-grandmother
Mautch, and 10 other family members on Randy's side, all living in the
area. We plan a sledding play-date with Max's second cousins, in
between whoops and bounces on cousin Morgan's trampoline. Great-uncle
Dennis hasn't seen Max since last
December, when we were sacrificing his growth in an attempt to
save his liver. Thanks to the ever
expanding circle of people who have
seen us through the big things, we're enjoying the little things
Sat Nov 24, 2007
Today marks the end of a week-long experiment and milestone for Max:
8-hr untethered windows.
Those 2 additional hours make a big difference. They mean that Max is
free from his pumps for most of the time he's up and about, except for
just a couple of hours in the morning, which is usually pretty mellow
(mom) time anyway.
He reached this point through gradual increases in his continuous
g-tube feeds, by drips and drops. These increases recently got his
caloric input through the gut to the point where he could lose 2
additional hours/day of TPN.
One purpose of the experiment was to check whether Max's system could
handle the longer off-window, without his glucose level crashing. He
chases the cats just as enthusiastically at the end of his untethered
window as at the start.
A second goal was to check whether Max would continue to grow well.
The experiment was stopped too soon to know. We requested a return to
the 6-hr untethered window starting tomorrow, because Max has been
vomiting if he receives more than just half of his regular feeds.
This may be a side effect of his epogen
shots, which can cause nausea.
Once we've finished this round, we hope his feeds can increase, his
TPN can decrease, and his hematocrit will normalize. Only 2 shots
left to go.
Sun Nov 25, 2007
Max spends a lot of time leaning over the bathtub this afternoon.
I've never seen him do anything like this. He leans as far over and
into the tub as he can, again and again. I guess that my shampoo is
in there. Max likes to knock the bottle into the tub, though he has
never shown any interest in trying to retrieve it before. Lean over,
stretch, stand up. Lean over, stretch, stand up. When he eventually
tires of this, I race away so that he won't know I've been spying on
him from around the corner. Hours later, I
Monkey sitting in the tub.
Our friend Jan
told us that we wouldn't believe how much more love we'd feel for Max
with his every development. I am still amazed as each new reservoir
Tue Nov 27, 2007
Baba spies on Max for 12 minutes today. She doesn't mean to, but
somehow my cell phone calls her from inside my fanny pack this
afternoon. She hears muffled voices, and determines that they are
ours. She says hello, but no one responds. She tries calling our
house. She eventually reaches Randy on his cell phone. He tells her
that we're at the hospital, and can't talk. He doesn't think to say
"Everything is fine," because that would require realizing that some
people might worry about why we're here.
If baba had spied on us just 10 minutes later, she would have heard
cheering. Max is in for his occasional checkup. His team gathers
round to admire his growth charts. He continues to gain weight, and
is now registering on the charts for height. He decisively rearranges
the chairs in the exam room (having been interrupted from this task in
the waiting room), and then chases me up and down the corridors. Each
time he catches me, we hug, then he pushes me away for more
Max will resume his 8-hr untethered window starting next week. The
team is already talking about a 10-hr window as if it's just a matter
of time. We call baba and jiji on the way home to let them know that
everything is more than fine.
Fri Nov 30, 2007
Randy and I see a local production of Tartuffe, a comedy by
Moliere. Its subtitle is The Imposter. I'm feeling less
like one as we venture out more. A couple weeks ago, Nurse Barb
watched Max so that we could attend a University dinner. Tonight, NP
Kristin reunites with Max. Nanny Kate is busy, playing the role of
Elmire -- the character who exposes Tartuffe for the imposter he is.
Her bio in the program says that she works as a nanny. We smile over
this. It's good to be out.
Sun Dec 2, 2007
Short gut kids seem to defy expectations.
We knew Max was unusual in his still-elevated ALT and AST enzymes.
This morning, we learn that he is in fact, unique. These indicators
are usually the last to normalize as Omegaven allows the liver to
heal, but none of the other Boston kids have shown these kinds of
elevations this far out. Max's numbers suggest continued liver
No one knows why. It's hard to know with an N of 1. Dr. Puder
advises not giving blood transfusions unless absolutely necessary,
because their antigens might tax the liver. He prefers to see if the
hematocrit will stabilize at a low but acceptable level on its own,
which it apparently often does. We'll follow his advice. It doesn't
take much to convince us to hold off on the epogen, which Dr. Puder
doesn't use. We did get pretty good at giving Max his shots, and they
did boost his hematocrit -- not a huge amount as of last week's labs,
but the numbers may continue to improve even after finishing the
treatment. The epogen might also be more effective than the numbers
show, given Max's loss of blood in the middle of the treatment. But
we're happy to skip the nausea, and the associated vomiting and
reduction in Max's feeds. We'll start to increase feeds again and
hopefully confirm that the epogen caused the nausea.
Another possible cause of the elevated liver enzymes is ranitidine
(Zantac, an H2-receptor antagonist), which I inject into Max's TPN bag
each day to inhibit the production of stomach acid. This medication
reduces stoma output so that Max can take in more food without getting
dehydrated. We know other Omegaven kids are on ranitidine without
issues, but pharmacist Kathy Gura indicates that it can tax the liver
too. A newer class of drugs, proton pump inhibitors, serves the same
function but can have the same problem. So we'll try cutting the
ranitidine. We actually tried this back in the spring, for
independent reasons: reduced stomach acid also brings increased
susceptibility to bacterial overgrowth, and less breakdown of the food
proteins that trigger allergic reactions. Max's stoma output did
increase, but not dramatically. We went back on the ranitidine with
the summer's neon
vomit episode, in an attempt to return to our medical routines and
reduce the acid content of the vomit. Now we can try cutting it
again. If Max's stoma output does increase significantly, we can
provide replacement fluids through his IV line. This is apparently a
common approach in Europe.
We'll continue to track the liver enzymes. We'll try not to get too
attached to our expectations.
Fri Dec 7, 2007
Technically, Max is fast-walking. (To qualify as running, PT Betsy
informs us, you need both feet in the air at the same time.) After
Max got his first taste of taking steps on his own, he quickly
transitioned to stints with his backpack, treks around the block, and
fast-walking after the kitties. And to a real sense of independence.
Max likes to walk into his room and shut the door behind him. Randy
recently intruded on his privacy to find him sitting and reading "Mr.
Brown Can Moo."
These developments bring a changing of the guard. PT Betsy cut back
from weekly to biweekly visits around the time we went to Paris; now
she's down to monthly. Speech therapist Beth will increase from
monthly to biweekly visits. Max aced a hearing test last month. His
comprehension seems quite good. This morning, I say "Chiisana neko,"
and Max fast-walks to his shelf and selects the Japanese book by
this name (small cat). But he's not saying much.
We were told early on that short gut kids can be delayed in speech,
because they do not use oral motor skills for eating to the extent
that typical kids do. (OT Judy is still helping us work through oral
aversion issues -- she'll remain on a weekly schedule.) I remember
how crazy the idea seemed, that a lack of ganglion cells in the
intestine could lead to language delays.
Not that we're failing to communicate. Max points to his head, to show me where
to kiss it after he has bonked it, and to play along when I sing the
monkeys-jumping-on-the-bed song (right after "One fell off and bonked
his head."). He has reliably used no fewer than 3 names for
Fuzzy/cat/kitty (starting with Fuh ee, then Tuh, and now Tih kee). We
have long talks. They usually wander all over the place and I have no
idea what they're about. Other times, they
are remarkably focused, like our 10-minute conversation last week
consisting of a single word. "Wow."
Technically, I know these aren't conversations. But I'll savor them
in this window before Max is fast-talking.
Sat Dec 8, 2007
They say you should spend two months' salary on an engagement ring.
How about to save your baby's life?
Our insurance company never did come through on covering our weekly
labs in Boston. They got us on a technicality. Each of our bills
said that we had 6 months to appeal, and we were advised to wait so
that we could build our strongest case around Max's continued
improvement. We appealed within the 6-month window, after Max's
bilirubin levels had normalized. All of his primary doctors wrote letters
explaining how Omegaven had saved his life. But the insurance
company said we were too late. It turns out that the appeal we filed
before moving to Boston overwrote everything else, and started a
90-day clock ticking for filing any further appeals. If we ever knew
about this deadline, we forgot it by the time we started receiving
bills in Boston. The deadline passed while we were still living
there. In October, the day before my birthday, we learned that the
Colorado Division of Insurance backed our insurance company's decision
to deny coverage.
A lawyer could probably contest the technicality. But that would only
mean getting our case considered, not necessarily approved. We
ultimately decided not to pursue this further -- and to focus instead
on our gratitude for all that Max's insurance has covered, and will
continue to cover.
It was easy to forgo an engagement ring, after deciding -- as grad
students on a beach on the North Sea rollerblading down the coast of
Holland -- to spend the rest of our lives together. We're so lucky
that Max didn't have to go without Omegaven.
Tue Dec 11, 2007
Randy needs to chase Max down for hookup tonight. Max was wrestling
with Nana around this hour yesterday, and with our friend Marie on Saturday. When Akira
wouldn't wrestle with him out at dinner Sunday, Max spent the time
scouting the Vietnamese restaurant (quite successfully) for strangers
to admire him and kids to play with instead. He still has plenty of
energy at the end of his 8-hour untethered window. That's the good
The bad news is that he is still vomiting, almost 2 weeks out from his
shot. 7-10 days was one estimate for how long the nausea
might last if epogen were the cause. But this came from a home health
care dietician who also suggested that the mic-key (the part of the
g-tube that goes into the stomach) should last 1 year. Consensus
among short gut families seems to be more like 1-4 months. So we're
hoping these are just very rough estimates.
Max is showing some signs of improvement. His continuous feeds start
in the evening, and his vomiting has been migrating later into the
night, suggesting that he can take more food in before having to send
some back out. We're continually adjusting his input, trying to find
levels that will avoid vomiting but give Max enough calories to
continue enjoying his 8-hour off windows. And all that untethered
Thu Dec 13, 2007
Randy's Christmas present for Max arrived in the mail yesterday. I
managed to convince Dada to wait until this weekend to open it.
It's probably not a coincidence that Max is now saying "Da!" for Yes. Nanny Kate first
pointed this out yesterday, after she asked Max if he wanted to hold
her hand. I hear it this morning when I ask Max if he wants me to
build my fortress. So I erect my wall of pillows, which Max collapses
and falls on top of, giggling.
He hasn't learned "Nyet." I won't ask him whether he thinks Dada can
wait until Christmas to open yesterday's package.
Fri Dec 14, 2007
People ask whether Max has influenced my research, and whether my
research has shaped my parenting. The disconnect is often more
striking to me than the connections.
Max and I read one of his favorite books this morning, "Kore Naani?"
(translation, "What's this?"). It features scores of colorful
objects organized by category: vegetables, electronic goods, toys. We
turn to the page with shirts, pants, and sweaters. I read Max the
Japanese category name (fuku) and translate for him (clothes). He
grabs at my glasses. As I remove them, I wonder if he thinks they
count as clothes. He points to my eye. I remember the game we were
playing yesterday after I removed my glasses, with me blinking and
winking while saying "open" and "close." We go through a couple
rounds of this before I get the connection.
None of my research prepared me for how endearing it is to understand
what Max is thinking.
Tue Dec 18, 2007
Upon announcing last spring that she was pregnant, one of Max's case
workers confessed: She was thrilled, but her job makes her nervous.
Randy and I didn't say a word, but I was sure we were thinking the
same thing. Her job should make her anything but nervous. No one
ever knows what's coming, but everyone manages to handle whatever it
is, somehow. The case manager gets to see this up close, day after
day, with family after family. She watched us adjust to Max's ostomy
for his functioning small intestine, his fistula for his
non-functioning large intestine, the central IV line in his thigh that
provides the majority of his nutrition, and the g-tube in his stomach
that provides most of the rest.
It's true that we have our dark moments, when we feel like almost no
one can understand what we are going through. But those moments are
rare. She doesn't see them. She does see how much Max has filled our
lives with giggles and hope and wonder. This morning, Max points very
precisely to a spot just underneath my lip. I explain that it's a
pimple, and he seems satisfied. I love seeing the world, warts and
all, through his eyes.
It turns out that Randy wasn't thinking any of this. He figured the
case worker was talking about other kids. The thought that Max might
make an expectant mom uneasy hadn't even crossed his mind.
The case worker's baby is due next month. I am thrilled for her. I
am not nervous.
Wed Dec 19, 2007
Max didn't end up opening his Christmas present from Randy last
Nana, Randy, Max, and I spend the good part of an hour searching for
our Christmas decorations this afternoon. Not the stockings from baba, which have
been hanging from our mantel since last October, just below the cards
we received around Max's birth. We're looking for lights and
ornaments to decorate the tree we brought home yesterday. I find them
before Randy finds where I hid his present for Max.
Thu Dec 20, 2007
3 to 50 days is a pretty wide window. Kathy Gura lets us know that this
is how long kids have taken to recover after the
removal of ranitidine from their TPN. Max is at Day 17. No
movement of his ALT and AST enzymes yet.
His hematocrit continues to improve nicely though, 3 weeks after his
last dose of epogen. His nausea is better, but not gone. We've been
able to up his feeds to his pre-epogen level during the start and end
of his continuous g-tube feeding. In the middle (2-8 am), they're
still at half their earlier levels. For better and for worse, we
don't have as clear a sense of when this window should end.
Fri Dec 21, 2007
Max discovers his new best friend. Auntie Naoko discovers her new
best workout. She swings Max around by the ankles, and flips him back
and forth and head over toes on his wrestling pad. When she first
tries to hand him off to me, he darts back to her, pleading. When she
leaves to take a water break later, Max is clear with his demands. He
thrusts a finger at her, jabs it repeatedly into the wrestling pad,
then waves his hands crazily in the air. "And
now," cried Max, "Let the wild rumpus start!" -- or, let it
continue for ANOTHER 10 minutes!
Sun Dec 23, 2007
Max is communicating on his own terms.
Like when he wants something. He has realized that we can't help but
fall all over ourselves to give him whatever he wants when he signs
"Please," rubbing his palm sweetly in a circle on his chest. He signs
"please" a lot.
He talks when he's good and ready. When baba called Friday to say
that their flight was cancelled due to storms in Aspen, Max pushed
buttons on the phone for several minutes, but said nothing. After
hanging up, he played with the phone for another 15 minutes, pushing
buttons and saying "baba." Randy swears Max said "jiji" upon waking
from his nap today. He hasn't reproduced it, but he is following baba
around calling her name.
Max can be redundant. As we looked through a calendar together, Max
signed "train," using both the informal choo-choo sign (pulling at the
air with his fist) and the ASL sign (sliding the fingers of one hand
over the fingers of the other hand). The picture was of a clownfish.
Max left no doubt what he was thinking, if not why he was thinking
Randy thinks the two prominent stripes on the fish (like tracks?) had
something to do with it. This afternoon, he opens Max's Christmas
present, a remote-controlled airplane. He seems well-versed in
behavior on one's own terms.
Tue Dec 25, 2007
Short gut families engage in science fiction. Some of us think about
what it would have meant to catch a glimpse of our current lives, back
in the darkness of the early days. Others talk about how they would
reassure themselves if they could travel back in time to those
Randy whispers "Totally implausible!" to me throughout any movie
involving time travel. But even if we can't transform our science
fiction into fact, I think short gut families are doing the next best
thing, by sharing our lives and reassurances with other families in
the darkness of their early days. I've added a Getting
started section on the short gut wiki as part of this effort.
Max and Randy seem to have covered their Christmas needs pretty well
this year. Sharing with other families may provide my best chance to
Fri Dec 28, 2007
I like to talk with Max about who he will be seeing. He used to look
around excitedly for them. "Later," I would clarify, and he would
give me a then-why-are-we-talking-about-them-now? look that would make
Now we've got our morning routine. When I ask Max if he wants to hear
what we'll do today, his eyes light up and he burbles his agreement.
This morning's rundown includes Auntie Naoko, Uncle Mike, physical
therapist Betsy, Dada, and Nanny Kate. Max thinks for a moment.
"Baba?" he asks. I explain sadly that baba and jiji are on their way
to the airport.
Too soon. We've been spoiled all week. Naoko and Mike sent their
menus in advance, and arrived with a suitcase full of fresh bamboo and
other California specialties. Mike eventually shared his secret to
frequent hugs from Max -- kneel down and open your arms wide. My
family did a lot of that between rounds of ping pong, jumping on the
bed, and sledding. I can't wait until I can tell Max he'll be seeing
Mon Dec 31, 2007
Our wish for the new year, two years ago, was to meet Max. Last year,
it was for Omegaven to save his life.
Max seems to cry out after Randy puts him to bed tonight. But the
monitor shows him playing with
Monkey. When I turn up the volume, all we hear are giggles.
Sweet, silly giggles. Tonight, we wish for more of these in the new
Tue Jan 1, 2008
2008 brings wishes for many other kids, too. An Omegaven family in Michigan is thinking about attending a wedding in Hawaii this summer.
The mom didn't consider it an option until she read about Max's trip
Paris. We update the travel
tips on the short gut wiki. These tips were started by a parent
who regularly flies solo to and from Boston with her son and his
suitcases of pumps and meds. I still find this prospect terrifying,
but their travels are expanding my sense of options, too.
Thu Jan 3, 2008
How big should Max be? It depends who you ask. Pittsburgh apparently
keeps their kids at the 5th-10th percentile for weight, based on their
belief that providing minimal calories helps protect the liver.
Boston keeps their kids around the 50th percentile. This is where Max
weighs in during his regular checkup at Children's this afternoon.
The great news is that his continued growth means we can try adding
another 2 hours to his untethered window, for 10 hours off TPN each
day -- almost the entire time he's up and about. His feeds are back
up to his pre-epogen
levels as of today, 5 weeks after his final shot.
Then there are Max's elevated liver enzymes. We hold out hope that
they will improve with next week's labs (37 days after removing
ranitidine from his TPN) or with the labs 3 weeks after that.
If not, another possible stressor on the liver is
bacterial overgrowth in the intestine. Max has had only two
obvious episodes of overgrowth in his functioning intestine, where his
stoma output increased substantially and then normalized following a
treatment of oral antibiotics. We have felt very lucky to avoid the
on and off antibiotics each month that many short gut doctors
prescribe to treat or prevent recurring overgrowth. But GI Jason
suggests that Max may need this cycling. Perhaps his baseline stoma
output (~40cc/kg/day) isn't his true baseline, but instead represents a constantly-elevated level due to bacterial overgrowth that is also taxing his liver.
Or, bacterial overgrowth could be building up in the non-functioning
distal bowel. This might be treatable by irrigating the bowel
periodically with saline or antibiotics. We had been irrigating with
saline around the time Max first came home from the hospital, but
stopped after gut bugs translocated
into his blood stream, possibly as a result of the irrigation
Another possibility is that Max is getting too many calories. We're
not sure whether the Pittsburgh restrictions are still relevant in the
context of Omegaven. Or even without it. (When Austin's GI care switched from
Pittsburgh to Boston, his weight went up while his liver numbers
stayed the same or improved, even without Omegaven.)
We're not eager to restrict calories or irrigate or start cycling
antibiotics (which kill off good bacteria along with bad, throw off
digestion, could be difficult to get off once you've started the
cycle, and may lead to the development of resistant strains). For
now, we'll wait.
Fri Jan 4, 2008
I have been feeling bad about Max's black eye. But this afternoon,
neighbor Keith points to it and says, "Max is a toddler, like
Max rarely just walks anymore. He seems to prefer a high-stepping jig
or a Wild Things stomp. He occasionally spins. This evening, he
takes several steps backward until he comes up against the basement
wall, where he stands with his arms splayed out at his sides. He
looks around furtively, then abandons his post to check on the Roomba, which is
vacuuming just around the corner. He returns a few seconds later and
backs into position again. He seems to be trying to get the Roomba to
come look for him, but the device never emerges across many
repetitions of this routine.
I wish I had caught Max before he fell face-first into the corner of
my laptop stand. But I do love how he keeps us guessing about where
he's going and how he's getting there.
Sat Jan 5, 2008
A visit from Grandpa brings a certain sense of urgency. Max shakes
the gate at the top of the stairs in the mornings, imploring me to
take him down to see "Gaga." After Grandpa pokes his head out to say
he'll be up soon, Max shakes the gate harder, plasters his hand to his
chest, and abrasively signs "please."
At least he's fitting us into his busy schedule. His major project
these days is the bathtub. What began with knocking over my shampoo
bottle and tossing in Monkey is now many layers deep. Each night, I
set enticing items on a nearby table -- a ball, hand cream, scrunchies,
Newsweek. Each morning, Max freezes at his first sight of the
offerings, then throws them in one by one. He scavenges the house for
additional items as needed.
He does take breaks from his work to run into Grandpa's legs and hug
them, and to reach up to hold Grandpa's hand and lead him around the
house. He recruits Grandpa into his purposeful routines, like laps
around the ping pong table while sporting Grandpa's comb. Each lap
involves one stop to comb Grandpa's hair, and a second stop halfway
around the table to comb his own hair.
Max waves as Grandpa drives off for the airport this afternoon. This
marks the end of a month of holiday visitors jumping on our beds. Max
has never been better. Saying goodbye to family has never been
Thu Jan 10, 2008
Maybe we should know better.
In my lab, we try not to get too excited about data from the first few
kids who participate in a project. We can't tell what's going on
until we have a larger sample, usually dozens of kids.
We won't get those kind of numbers with a 1 in 5 million condition and
a lifesaving treatment that became available only recently. So we
wildly over-interpret our sample of 3: Max, Austin, and David. Each has extreme
long-segment Hirschsprung's, and each has elevated ALT and AST liver
This sample makes two of the
four theories on the table (proximal bowel and calories) seem less
plausible. Austin has been cycling on and off antibiotics each month
to treat the proximal bowel (as GI Jason is encouraging us to try),
but this has not affected his enzymes. And Austin's calories have
varied in how restricted they have been, also with no effect on his
enzymes. The three boys span a wide range of caloric inputs, with Max
falling in the middle.
The ranitidine and distal bowel theories seem more plausible. Austin
and David are both on some form of histamine receptor antagonist to
inhibit the production of stomach acid; Max's was discontinued 5 weeks
ago. No change in his enzymes yet with yesterday's labs, but we're
still within the 50-day window indicated by Boston. And a short gut
mom outside of Boston's sample suggested that her son's recovery took
Austin and Max both underwent periodic irrigating of the distal bowel
with saline a while back, but none of our kids are getting this now.
So bacterial overgrowth here could be a contributor.
Or maybe these wild over-interpretations are exactly that. Despite
having the same cause of short gut, our kids may not be all that
comparable. Max and Austin's numbers have been high since they were
at least 7 months, while David's have only increased recently. He's
11 months. But he got started on Omegaven at 2 months, while Max
didn't get started until 7.5 months. Austin isn't on Omegaven,
because other than these elevated enzymes, his liver numbers are
normal. (The only way to get on Omegaven is with elevated bilirubin
levels, or as part of clinical trials with newborns in Boston.)
Dr. Puder thinks these elevated liver enzymes have nothing to do with
Hirschsprung's specifically, and could just relate to short gut more
generally. Austin's numbers could reflect not being on Omegaven,
David's numbers could reflect other things he has going on, and Max's
numbers could just be a mystery.
We know not to draw conclusions from small samples. But we can't help
but search for another answer.
Fri Jan 11, 2008
Max is walking down steps!
My track record of drawing life metaphors from him is abysmal. When
he was still in the hospital, we couldn't believe we could just plop
him -- tubes and all -- into a tub for full-dunk baths. Watching him
luxuriate in the water filled us with a sense that fears can become
Then we learned that no other parents plop their short gut kids into
water, due to risks of bacteria entering the bloodstream through the
central IV line. Fears can be rational. No more dunk baths, at least
not without precautions.
I still think the dramatic ball
displays found in Children's Hospitals capture certain aspects of
what makes life fascinating. But this metaphor doesn't exactly
In Boston, Max's lost shoe
suggested that if you give up hope, things will work out better than
you expect. Maybe this is true, but it doesn't seem like a metaphor
to live by.
Not that every experience needs to have a deeper meaning.
But walking down steps! For weeks, Max has spent long moments
contemplating the steps leading down to his mosh pit. Before today,
his solo descents took the form of thrusting his left foot down to the
first step, then falling forward onto the pad on the floor below that.
After a brief pause facedown in the pad, he would pick himself up and
move onto his projects, which tend to involve using small objects to
work on his throwing arm.
Max contemplates the steps again this afternoon. He thrusts his left
foot down to the first step. His right foot follows. He stands on
the step. He squeals. We squeal. He falls forward onto the pad. We
go through 10 rounds of this. Sometimes he reverts to getting only
one foot down before throwing himself forward. Other times, he steps
down to the pad after stabilizing himself on the first step, and
almost sticks the final landing.
The outcome doesn't seem to matter. Max squeals through whatever
happens, picks himself up, and goes again.
Sat Jan 12, 2008
Max says "Uh oh," while looking at Dada's stack of freshly-packed bins
of Christmas ornaments. The stack looks fine to me. I ask him what's
wrong with it. Max climbs the steps, walks over to the ornaments, and
demonstrates how easily each bin can be pushed off the stack.
Sun Jan 13, 2008
Either my advice is no good, or I'm not following it.
I recently placed a record long-lasting bag on Max. These days, a
3-day bag is a record bag. So I've been giving Randy tips (some
solicited). I have him watch me place a new bag before Max's nap
Before Max came along, Randy and I competed in Nastar races at an
annual ski conference. We carved fast turns around icy gates, then
caught our breath while our times were called out over a loudspeaker.
The year we entered on snowboards, my time was much faster than anyone
else's in our group. I spent the rest of the conference offering
advice (some solicited): anticipate turns, keep as straight a course
as possible, fixate far down the race course. At the end of the
conference, race times were posted on a bulletin board. We couldn't
find my name until we looked at the bottom of the list. I was the
slowest by far. We must have misheard my time or heard someone
Max wakes from his nap with his bag off -- a record short one.
I'm thinking I should hold off on offering tips for a bit. We'll see
whether I can follow my advice.
Tue Jan 15, 2008
We're looking into Max's 6th hospital. Or his 8th, depending how you
1. Good Samaritan -- where Max was born
2. St. Joe's -- where he moved on Day 3
3. Children's Denver -- where he moved on Day 22
4. Children's Pittsburgh -- where he went for transplant consult
5. Children's Boston -- where his liver was saved by Omegaven
6? H˘pital Necker-Enfants Malade --
where they were ready for Max, but never met him
7? New Children's Denver -- a gorgeous facility that opened last fall.
We hear the inpatient rooms are really nice.
8. somewhere in the Bay Area...
Randy and I are up for our sabbaticals next year, and have proposed to
spend them at Berkeley. We would get great research experience, and
Max would hopefully see more of our LA family (Grandpa and Grandma,
Auntie Naoko and Uncle Mike). And maybe more of baba, who was
determined to always have a daughter in the Bay Area to visit from
Cleveland. (Across the 3 of us, she succeeded for 19 years straight.)
We could take Max on an excursion to tour my alma mater, and continue
the tradition of lulling him to sleep with our nostalgia.
Many things would need to come together for this plan though: health
insurance, health care, child care, reality checks. For now, we're
Fri Jan 18, 2008
A grad student in our program, whose office is next to my lab meeting
room, likes to make fun of us for singing "Happy Birthday" almost
every week. But it's good to celebrate birthdays.
Transplant recipients celebrate the birthday of receiving organs --
the gift of life. Christian
celebrated his last month. He is doing phenomenally well, wowing the
transplant world and paving a new path. His mom sends me an article
oil improves bowel transplants in mice -- decreasing infection and
rejection rates, even on low doses of immunosuppressant.
Today is the first birthday of Max receiving Omegaven, his gift of
life. He may yet celebrate a transplant birthday too. If he does,
one gift of life may help another again.
We have decided that the grad student is just jealous. We'll
celebrate all the birthdays we've got.
Mon Jan 21, 2008
Randy likes to claim that he is shy.
Max likes to hand out toys to other kids in the toy store.
Yesterday, he spent the afternoon with big boys Max
and Henry, giggling while throwing toys and chasing a soccer ball
around with them.
Earlier in the weekend, he pushed hula hoops on our friends Tim and
Sheila, and insisted on karaoke from Akira. (Akira kept pushing a
button that would play songs with words, and Max kept canceling his
selection by pushing the button for music only.)
Today, Max hams it up for a photo shoot by a friend of Nanny Kate's.
He doesn't know the photographer, but eases right into his
look-how-cute-I-am routine for her. He bounces
Monkey on our big exercise balls, like PT Betsy used to do with
I would take years to get comfortable enough with people to do all
that Max is doing. I think he is seriously undermining Randy's case.
Thu Jan 24, 2008
Randy aggressively upgrades his computer operating systems. I prefer
the familiar pros and cons of whatever system I'm using.
Max is still chasing kitties at the end of his new 10-hr untethered
window. His feeds are going up. He is staying out of the hospital.
I don't want to change a thing. But his elevated
ALT/AST are concerning. Denver wants to biopsy his liver if we
don't see improvements. Randy wants to start flushing the distal
bowel with antibiotics. He's convinced this will fix the problem.
I'm reluctant, worried about the risk of sepsis, hospital stays, and
I know I'm mostly just being stubborn about my computer systems. But
yesterday, Randy copied my outdated
system to replace his buggy upgrade. I wish it were more obvious
when the time has come to try something new.
Sun Jan 27, 2008
Peer pressure is looking pretty good.
We celebrate the gorgeous weekend with trips to the park. Randy
wonders if Max's shoes are hurting his feet. Max seems reluctant to
walk, and insists on holding both my hands to stroll down the easy
terrain of our sidewalk.
A dozen kids are running around the park. Max watches them. He lets
go of my hands. He runs off of the stable sidewalk into the gravely
playground pit. He demonstrates how he can do this again and
On our next trip, we approach the park by way of the tougher terrain
of the uneven ground. Max holds one of my hands. As we get closer to
the playground, he lets go again, and runs across the grass to the
Both days, he comes home to many chews and swallows of rice, and
nibbles of grapes and tomatoes -- a relative feast for Max. He didn't
even see the other kids eating. But maybe he suspected.
Mon Jan 28, 2008
Max may be one step closer to catching a kitty.
Speech therapist Beth recommends focusing on simple sounds
occasionally. It's hard to remember to simplify, because Max seems to
comprehend what we are saying regardless. But simplifying may help
So while Randy sets up pumps tonight, I play with Max with a puzzle
piece showing a cat. And I meow. Max watches my mouth closely. He
says "puh" repeatedly, which is one of his most reliable words, for
"up" when he wants a hand to help him get up. He mouths what looks
like "mow" several times. Then he meows.
His smile conveys such pleasure and surprise, even before I start
cheering and Randy runs over to meow with us. With each of his
subsequent meows, Max looks a bit sheepish about all the attention.
A sweet meow could be a more effective lure than the maniacal laugh
that he currently approaches the kitties with.
Thu Jan 31, 2008
For better and for worse, Max's lab numbers are up this week.
His H&H (hematocrit and hemoglobin) are normal for the first time in
our recorded history. We credit the epogen.
These numbers have been rising nicely since he finished his month of
shots last November. It's probably not a coincidence that it's
getting harder to keep up with him. Since we don't want to face these
shots (or their associated nausea) again, we hope the epogen has
jump-started Max's system so that his bone marrow can produce a
healthy supply of red blood cells on its own.
His liver is still being taxed. His elevated
ALT/AST numbers are slightly up, 58 days since we removed the
ranitidine from his TPN. Randy and I are engaged in heated debates
about whether to start
flushing the distal bowel with antibiotics next week.
Fri Feb 1, 2008
Connor's family is talking about him coming off of TPN. I feel
drunk with hope.
This milestone may not be relevant for us. Connor has twice as much
small intestine as Max (which puts him over the minimum length that
doctors traditionally said was needed to stand a chance of coming off
TPN someday), plus his entire large intestine.
But the fact that they can even think about taking this step reawakens
my sense of possibilities. In Max's first months, he was
100% TPN-dependent for his nutrition. This number has gradually crept
down -- to 90%, then 80%, and now 70%, thanks to his intestine
adapting, allowing increases in his feeds. He continues to grow well
following our most recent shift toward more food, less TPN.
TPN may still be winning, but food has the momentum. And the hope of
stories like Connor's.
Sat Feb 2, 2008
We once polled our friends about how they decide when they are done
eating a meal. Most of the women said when they are full. Most of
the men said when the food is gone.
Luckily, Max seems capable of dealing with each kind of parent.
He munches on corn chips this afternoon, marking a major breakthrough
on the oral aversion front, since
often just the sight of crunchy food will make him gag. But today he
munches, smiles, giggles, and swallows, through several pieces.
I suggest stopping at this point. Max is essentially full from his
formula and TPN, and I think it's important for him to end with a
successful eating experience. Nanny Kate has been using this logic
in her regular feeding sessions with Max, which seem like a major
factor in today's breakthrough.
But there are still corn chips left. Randy hands some to Max, who
munches, smiles, and swallows. Then he vomits everything up. I feel
compelled to check whether Randy appreciates the relevance of what I
But there are still corn chips left. After cleaning Max off, Randy
hands him another round. Max munches, smiles, and swallows. And
keeps this round down.
Sun Feb 3, 2008
Aunt Katie recently referred to herself as her father's daughter.
Something about lusting after a cutting-edge car.
Max is his father's son, his Aunt Katie's nephew, and his grandpa's
grandson. He humors us while we draw monkeys, cats, and each other on
his magnetic sketch pad. But what he can't stop signing for is
"truck." We draw one, he points out the wheels and adds his own
touches, then he signs for the next one.
His favorite form of pretend play is flying his toys around like
planes -- whether a hard plastic gadget, a foam puzzle piece, or a
tiny stuffed elephant sent by cousin Toshio from Thailand. He
makes a quiet whoosh that sounds like Randy's remote control
I couldn't relate to the O'Reilly's vehicle lust. I may need to work
Mon Feb 4, 2008
Despite our differences in feeding philosophy and vehicle lust, Randy
and I usually see eye-to-eye on medical decisions. We are similarly
convinced by data and logic. But it turns out that I rely more on
data, while Randy relies more on logic.
We now have 3 options for trying to address Max's
Ursodiol/actigall: This is a bile acid that helps regulate cholesterol
and prevent gallstones. Many short gut kids are on this medication
until their ALT/AST normalize. Max has been on this medication across
many months without any apparent improvements, but it can take months
to work, and we haven't been able to give it reliably during other
complications. Some doctors and parents (including Randy) seem
skeptical about its effectiveness, but other doctors report good
effects, which are supported by published data. And Max's ALT/AST may
have risen when we discontinued the ursodiol around his epogen
Fish oil: Mainlining fish oil has vastly improved most of Max's
liver numbers. But omega-3's can also confer separate benefits via
the gut. Another short gut kid's elevated ALT/AST were recently
helped with ingested
fish oil. Boston now has their post-transplant patients on oral
fish oil, thanks to the path
that Christian paved.
the distal bowel with antibiotics: Randy describes this approach
as a "shot in the dark." There are NO data suggesting it will work,
and there are potential risks of sepsis from bacteria translocating
into the blood stream. Dr. Soden is willing to have us give it a
try. Dr. Puder says he thinks it won't have any effect. I nod
vigorously at Randy. But logically, bad bugs are likely brewing in
the non-functioning bowel, which would tax the liver via toxins that
are released by these bugs and transported directly to the liver
through the blood supply. Antibiotics should kill them off. Dr.
Puder says he thinks the risks are low enough that flushing is worth a
try. Randy nods vigorously at me.
All of the options have some logic to them, but only the ursodiol and
fish oil have data to back them.
In the end, Randy persuades me with our well-worn bread-making analogy
from grad school, when we churned out loaf after loaf of rock-hard
bread from our bread machine. We had many theories about what we
should change to produce an edible loaf, and took the scientific
approach of manipulating a single variable at a time. We ended up
with a lot of doorstops. Jiji pointed out that it would be more
productive to just change everything we thought would help, and then
worry about identifying exactly what was letting us enjoy our bread.
(And he used us as examples of poor
problem-solving for his students.)
So we run the first antibiotic flush this afternoon, and we buy the
fish oil and order the ursodiol to start later this week. Randy
starts to ask me whether I'll promise him one thing if this flush
works -- presumably something to do with never doubting his logic
again. I suggest it would be more productive to focus on Max getting
better. We can worry about identifying exactly how we got there
Wed Feb 6, 2008
Our plan was to flush the distal bowel once a day for 5 days. But the
antibiotics are staying "intraluminal" for many, many hours, because
this segment of bowel does not produce peristalsis to actively move
things through the system. So the new plan is to flush once every
other day for 5 days. Max seems unconcerned by both flush #2 and
g-tube fish oil #1 today.
Fri Feb 8, 2008
I find it hard to run proper experiments when it comes to Max.
We have been meaning to test the effects of the fiber we've been
adding to his formula since Pittsburgh. Benefiber is supposed
to slow transit time and increase Max's ability to absorb his food.
That's the logic. I'd like to see his data.
But over the ups and downs of the last year and a half, we've never
felt ready to run this study. During the chaos of major surgery, starting Omegaven, neon
vomit, and epogen
nausea, we haven't wanted to introduce other changes. When Max
was stable or steadily improving, we didn't want to mess with anything
mom recently ran a proper ABAB study -- one week on Benefiber, one
week off, one week on, one week off. She found that Benefiber
actually increased (worsened) Austin's outputs by 10 percent. She
switched to pectin,
which other families have reported good experiences with.
Motivated by her findings, we finish Max's first week off Benefiber
today. His outputs are also better without it by 10 percent, even
before we introduced the antibiotic flush. It's frustrating to think
that we've been adding fiber all this time, but exciting to hope for
more improvements in his feeds now that we're taking it out.
If we were capable of running proper experiments on Max, we would
proceed to a week back on Benefiber. And we would try pectin again,
under the assumption that the neon vomit and eventual surgery that it
triggered last summer resulted from Max's last few
cm of aganglionated intestine, now removed.
A big if.
Sat Feb 9, 2008
Max nudges me at the park this afternoon. This is usually his way of
telling me to hide from him or to chase him around -- some form of
giggly romping with mama. I take several steps in the direction he
indicates. He returns to climbing up the jungle gym steps to slide
with the big kids. I'm slow to get his meaning. In fact, it takes
Randy translating it for me. "Mom, you are standing too close."
I hope Max will still romp with me when no one's watching.
Sun Feb 10, 2008
Great Aunt Paula arrives at North Boulder Park this afternoon to find
Randy, Nana, and a dozen strangers circling a tree. They shake it and
throw soccer balls and a baseball up at it. Nothing dislodges the
lightweight plane wedged among the highest branches. Paula asks
whether it is Max's plane. Technically, yes. But I don't think Max
noticed its dramatic flight or the commotion that followed. He is too
busy trailing after kids on bikes. He does glance over as a limber
climber makes his way up 20 feet of slender branches and drops the
plane to the ground, to cheers from the group and relief for those of
us trying to hold Randy back.
Mon Feb 11, 2008
The stress of elevated
liver enzymes is abstract -- only Max's blood draws give any hint of a
problem. The stress of 7 bag
changes in 3 days couldn't be more concrete. We're not sure why
the bags aren't lasting. We place an order for Ilex, which we've
heard from other families works wonders in treating skin breakdown
around the stoma. We halt the fish oil through Max's g-tube while we
try to let his skin heal, just in case ingesting fish oil is somehow
causing his output to be more leak-inducing. We remember that Max's
bags also started failing around the time we started
Omegaven, when we wondered whether mainlining fish oil made his
skin more slippery and harder for a bag to stick to. Eventually, the
bags started working again.
Aside from one bag change right at bedtime, Max hasn't protested the
extra procedures, happily holding Nana's hands through them while
Monsters, Inc. He cries only once, when the creepy monster
Randall snatches the little girl, Boo. He looks to me, his lip
trembling. I reassure him that everything turns out fine.
It's easy to believe this in the abstract.
Tue Feb 12, 2008
The stoma queen used to say
that if you get an ostomy bag to last a day, you're doing great.
We've never appreciated that sentiment quite like we do tonight, as we
make it 24 hours between bag changes. Max's skin already looks much
physical therapist is so impressed with him this morning that she
plans to check in for her final session around his birthday. We
struggle to connect the Max running around now (and Betsy does think
he technically qualifies as running) with the Max of weekly physical
therapy sessions months ago.
Everything turning out fine suddenly feels more concrete.
Wed Feb 13, 2008
0 bag changes today. Max celebrates with a trip to the park. Just
like he celebrated his 2- and 3-bag days over the weekend. Randy and
I need to spell to each other now. "Should we go to the P-A-R-K?"
Otherwise, as soon as Max hears the word, he stands by the front door
and points insistently at our shoes, pleading until we go.
Thu Feb 14, 2008
Max is talking! As with the drama of his first
walking, the transition is marked not so much by the quantity of
what he is saying and signing, but by his sudden talking attitude.
No need for wind-ups or cheers from us.
He says "Boo" repeatedly in anticipation of the little girl's
appearance on Monsters,
Inc. He signs "ball" for Mike Wazowski, the short, round monster.
He's not limited to movie-talk. When I cut off his viewing time and
shut the door to his room (and to the DVD player), he executes a
beautiful "open-door" request, palms out, one hand swinging like a
door. Followed by "please." Impossible to resist.
When distracted from the movie, Max welcomes baba and jiji by
following after them, calling their names. He signs and says "bird"
upon seeing one in a book. He signs and says "wawa" for a picture of
a lake, for water in a toy, and as he selects Flood
Fish to read.
He is undeterred by slips, like when he points to his monkey, and says
I exclaim with each of his pronouncements, still. I can't help it.
What's new is how clearly, beautifully irrelevant this is.
Fri Feb 15, 2008
Just before lunch, our house shakes. It turns into a dream-come-true
When we read "Norimono Ippai"
these days, Max has no interest in the ambulance, subway, or cargo
ship. All he wants me to say as we flip through these pages is,
"Where's the helicopter?" He pounces when it appears.
So there's hardly a better gift than rushing outside to see a
helicopter landing on our street, about 30 yards from our house. Its
subsequent flights are even more dramatic -- with thunderous lift-offs
that send snow flying into our faces, and high flights with
wildly-swinging cargo of telephone poles, which somehow get nestled
right into position behind the houses around the block.
Apparently, we would have known about this event if we had opened our
mail, or read the local papers. We'll read them tomorrow, since the
two photographers covering the event chose Max as foreground for their
Sat Feb 16, 2008
It's all fun and games until you're picking through clumps of sopping
wet toilet paper.
project has been easy enough to accommodate. We had planned to
remove this tub as part of our remodel (before we fully appreciated
the seriousness of the advice to triple your contractor's estimated
time and cost). So we haven't missed the tub since Max rendered it
unusable with his layers of magazines, mail, and toilet paper. But
today, he squeezes around to the front of the tub, slides open the
glass door, and turns on the shower.
In the ensuing commotion, we miss Max's reaction to his work. I'm
guessing he was pretty pleased with himself.
Sun Feb 17, 2008
I ask Max this morning who he is going to see today. "Mama." Yes,
I'm right here Max. "Dada." Yes, every day. Who else? I'm angling
for baba and jiji, thinking about all the giggles they've elicited
playing hide-and-seek and catch. Who else will you see today, Max?
Mon Feb 18, 2008
Cousin Toshio is unimpressed, over video-skype, by the story of
adventure. Granted, Toshio has been busy in Thailand riding elephants down
steep trails, fishing at the world's largest crocodile farm using raw
chicken carcass for bait, and shopping by boat at the floating market.
But newspaper editors in Boulder agree with Toshio's assessment -- no
helicopter coverage, no photo of Max.
Guess you had to be there.
Thu Feb 21, 2008
Turns out the Daily Camera editor agreed you had to be there, and went
with the closest option -- video
coverage with a link from their
multimedia page. After my lab coordinator discovers it, Max
watches the video again and again, presumably more for the helicopter
than for his cameo with Dada.
Sat Feb 23, 2008
I was prepared to never doubt Randy's
logic again, I really was. At least to try.
We haven't implemented our throw-everything-at-them strategy with
Max's liver enzymes. We halted the
fish oil after a few days, due to its possible role in his ostomy bags
not staying on. His ursodiol became available from the pharmacy just
yesterday. So we've only flushed the distal bowel with
Max's liver enzymes continue to worsen with this week's labs.
The numbers don't make sense. Max seems so happy and energetic. He
is growing well. Maybe that's part of the problem. His enzymes had
been steadily improving until last fall, around the time his weight
and hematocrit really took off. So our revised
throw-everything-at-them plan is to:
Stop oral iron: Max has been receiving .6cc through his g-tube
each day for many months, but most reliably since his epogen
treatment last November, because you want to boost iron stores as you
stimulate red blood cell production. But too much iron can be bad for
the liver. His gut isn't supposed to be capable of absorbing iron
very well, but maybe he's absorbing better than expected. His hematocrit
continues to rise beautifully, so he should be in good shape to
take a break from the iron.
Decrease TPN calories, hopefully: Max continues to tolerate
gradual increases in his feeds, so we have proposed cutting his TPN
from 70% of his total caloric input to 60%,
which should help his liver. No word back from his GI team on this yet.
Restart oral fish oil: We're having better luck with our ostomy
bags, thanks to suggestions from other families to use
Eakin cohesive seals. They seem much more effective for Max now
than when he was a baby.
Restart ursodiol: We learned in Boston that a sugar-free version
is possible and better than the standard formulation, since sugar can cause fluid loss in short
gut kids. Our pharmacy initially said they couldn't get the tablet-
(vs. capsule-) form of ursodiol needed for compounding a sugar-free
version, but they came through with the prescription yesterday.
We never did identify the problem with our bread-making in grad school. After
changing everything we thought might help, we moved on to enjoying
delicious loaf after loaf. Anyone who has seen us disagree knows how
hard it would be for me to never doubt Randy's logic again. But I'm
really ready to move on to enjoying a healthy Max, regardless of
whether we can determine what did the trick.
Sun Feb 24, 2008
Our new symbol of hope is a
We're moving on from our 20-ounce
container for mixing Max's formula. Technically, his day's intake
still fits in the container, but we make extra formula to prime the
tubing in his pump, and to have enough in the pump bag to accommodate
a long nap (when Max is tethered) and enough in his bottle to
accommodate a short nap (after which he drinks from a cup). Our
latest increases to his feeds put the grand total over capacity. We
switch to a 32-ounce (1 liter) Nalgene tonight. Plenty of room to
Mon Feb 25, 2008
Puppy dog pajamas make us realize tonight that we still struggle with
We've been forced to confront the present from the start. Anne Lamott talks about taking
things "bird by bird" -- referring to the time her 10-year-old brother
was panicking about a report on birds he had due the next day. He sat
surrounded by unopened books, immobilized by the task ahead. Their
father put his arm around him and said, "Bird by bird, buddy. Just
take it bird by bird." Randy I often talk about taking things "bag by
Omegaven, the future seems easy to contemplate. Many older kids
are living full lives on TPN.
Other kids are coming
off of it.
Advances in the transplant world are reducing rejection rates and
the need for lifelong immunosuppressants. Who knows, maybe an
intestine will be grown for Max some day. David's parents are in touch with
researchers in Liverpool, who are transplanting stem cells into
Hirschsprung's mice. The big risk in stimulating their growth is
uncontrolled growth -- cancer. A Japanese team recently discovered a
way to make stem
cells from skin cells, without the cancer.
Then there's the past.
The stranger who offered her
liver for Max is the mom whose son was waiting for the surgeon on
his second day of life, when he suddenly pooped and went home to a
normal life. We were thrilled for her, but struggled thinking back to
how hard we wished for Max to poop during his wait for the surgeon.
Today, we open a gift of cute pajamas for Max, sent by another set of
strangers. Like us, they didn't get the poop they were hoping for
while waiting for the surgeon. Their son also had a stoma brought out
while the doctors tried to determine why his intestine wasn't working.
They were sure it was Hirschsprung's, but the biopsy was negative.
They tested for cystic fibrosis, but that test was negative too. Then
the parents found Max's page on immature
gut. They printed out the information for their doctors,
contacted the authors of the scientific papers, and confirmed this
diagnosis for their son, it seems. He should go home to a normal
life. We are thrilled for them, and grateful that our efforts could
help in their process. But it is still painful to remember how hard
we hoped for this outcome, too.
If we must struggle with one time period, those days long ago seems
like the best option. Revisiting them helps. In the future, I think
the past will be just fine.
Tue Feb 26, 2008
We shouldn't laugh when Max cries. But his communication
explosion is just so fun.
He has been breaking out ancient signs, like squeezing his fist to
request his milk, a sign that we haven't used since he stopped nursing
last summer. When he wants a story from Dad, he points to him, points
to their special chair, and rotates his palms out as if opening a
book. He tilts his head to his hands for "sleep" when he's ready for
bed, and slaps his thigh when he sees a dog in a book. He sings "hooo
hooo" and pulls at the air with his fist, giggling, as he flips
through his book about trains.
We haven't used these signs in months. We wonder whether he has been
brushing up with Mariana's
photo album. But some of these signs aren't in there.
This reminds me of when kids learn to pronounce a phoneme, and they
somehow manage to suddenly insert the new sound into all the
appropriate words. Max has decided he has things to say, and is
suddenly applying this idea to every word he has ever known.
Several nights ago, Randy informed Max that he couldn't have any more
milk -- too close to bedtime and hook-up to his g-tube pump. Max
cried. We didn't laugh at that. But then he looked up at Randy, and
pointed to the tears streaming down his face. Even when it's "look
how sad I am," we can't help but enjoy what Max has to say.
Thu Feb 28, 2008
Max has been studying his alphabet tool cards from our colleague Jon.
Each time he comes to S (screwdrivers), he says "Dada." I guess Randy
is usually the one replacing batteries in remote-control toys. Max's
favorite tools seem to be M (mallet) and K (keys), but this may be
driven by how much I can tell him about them. He swings his arm for
the mallet and turns his wrist for the keys. We don't spend much time
talking about cards like I (inshave).
Fri Feb 29, 2008
We'll probably always be mumu and dodo to cousin Toshio.
Perhaps building on his love for baba and Boo,
Max now also names Bobo (the baby chimp in Hug)
and blue (when I open his shades to reveal the sky in the morning).
When Nurse Barb comes over
tonight, we ask whether Max can say her name. He gets a faraway look
in his eyes. I start to wonder whether he heard the question, when he
bursts out "Bahr!" Our hearts swell. We cheer like he has figured
out how to grow
an intestine for himself.
When we vacationed in Kauai with then-toddler Toshio, he could say
mama, dada, baba, jiji, Naoko, and Mike. Everyone but Yuko and Randy.
Jiji advised us to be patient. Easy for him to say. When our
coaching attempts failed, we opted to change names, then reveled in
hearing Toshio say them. Friends of Max might want to pick nicknames
that begin with B, names they'll want for life.
Sat Mar 1, 2008
Randy has turned into a pretty cheap date.
His birthday always sneaks up on
me. February is just too short, even with Leap Day (which happens to
put our birthdays equidistant from Christmas). But Max and I don't
require much planning-time to give the gift Randy wants and needs most
-- sleep. He takes us up on it until almost noon.
Max makes a birthday card using his no-mess, no-spill paints. Each
color comes in an egg-shaped container with a brush at the top -- just
dab and paint. He reads the box as if he is looking for loopholes.
He finds them. The instructions don't cover what happens if you paint
your hands, sneeze and wipe your nose and face with your painted
hands, and throw the paints across the room.
Still, Max's card is a masterpiece. Randy is gloriously well-rested,
if only to devote his special day to writing a major grant proposal
under deadline. We do sneak out twice into the 70+-degree day, for
brunch and a pasta dinner and a quick stop at the park for another
gift. Max deems my swing-pushing unacceptable, slapping his torso and
insisting that Dada push there for a wilder ride. Priceless.
Wed Mar 5, 2008
I'm Max's mom. This is how Nanny Kate introduces me to her friends
When Max was in the NICU, the staff often referred to me as "mom" and
to Randy as "dad" as they made their way down the line of babies.
That might sound impersonal, but we loved hearing our brand new
"Max's mom" is even better. I think it's a first.
Kate's friends just want to know where Max is. He's home with Kiki,
Kristin, while we attend the opening of a photo exhibit by Kate's
photographer friend. (Max's photo doesn't make the final cut. No
chance of surprise
video footage emerging instead this time around, but he may pose
for another photo
Max refuses to say Kiki's name, despite practicing it in anticipation
of her visit. He makes up for it with a big hug and kiss.
Every day brings hugs and kisses and Max calling our names. We're
still Yuko and Randy, mumu
and dodo. But nothing beats being Max's mom and dad.
Thu Mar 6, 2008
We're implementing about half of our plan
of attack for Max's elevated liver enzymes.
Iron: GI Jason convinced us to not cut this altogether. He
doesn't want to mess with Max's unprecedented progress with his H&H,
and he doesn't think that iron at these levels (.6cc/day) should tax
Max's liver. We agreed to cut the dose in half, so that we can watch
for either effect (worsening of H&H, improvements in liver enzymes)
and adjust accordingly.
TPN: Rather than drop this from 70% to 60% of his calories, we've gone
half this distance. Max was recently on a reduced dose of Omegaven
due to Denver forgetting to order his supply, so we're taking
additional calorie reductions slowly. Also, GI Jason doesn't think
changes here will have dramatic effects on the liver.
Oral fish oil: The bad news is that Max's stomach seems unhappy
(gassy) with a full dose (2.5cc/day). The good news is that even a
fraction of this dose (.5cc/day) yields noticeable improvements in his
digestion and tolerating of increased feeds. The bad news is that
even this fraction makes him itchy. His short-lived bags seem to
reflect his scratching and pulling at them when he is on the fish oil.
We hope the strawberry
flavoring in the oil is the culprit. As parents accustomed to
inserting meds through a tube directly into our son's stomach, we are
slow to comprehend why no one produces fish oil without fruit
flavoring. The good news is that we can use a syringe to extract
fruitless fish oil from our adult capsules. The bad news is that the
adult form seems less effective in improving Max's digestion. The
concentration is different from the kid version, so we will try
varying the dose, and can also test other kid flavors like lemon.
Ursodiol: This seems to make Max very gassy and barfy. We're
holding off on it while we search for a stable fish oil solution.
The fact that Max is still happy to wrestle at any time on his reduced
TPN and iron regimen helps the plan feel half full rather than half
empty. We'll see how we feel after next week's labs.
Fri Mar 7, 2008
Last night, we went to the local theater to watch Nanny Kate perform
in Much Ado about Nothing. That title might also describe the scene
just before we left the house, when Nurse
Barb held up a bunny that she gave Max months ago. He enunciated
"bunny" so clearly that it seemed like he might launch into a
discourse about the species.
We were too stunned to cheer. We turned to discussing how Max could
have nailed this word so spectacularly on his first try. We've never
heard him attempt to say it. We wonder whether he learned it from his
Curious George video. Randy and I talk about bunnies even less than
we talk about inshaves.
This morning, I hold up bunny and ask Max who it is. He proclaims, as
clear as day, "boojah."
Sat Mar 8, 2008
I never thought I'd say this, but I'm really glad that friends landed
in the hospital this week.
An 8-week-old baby was sent to Pittsburgh for a transplant evaluation.
He has total intestinal
Hirschsprung's, meaning zero functioning intestine (compared to
Max and Austin's
20-30 cm). The parents were told he would die within a year.
Then they roomed with Austin,
who was in the hospital briefly with a fever, but is now fine. His
mom was able to tell the family about
Omegaven, about a girl in New Zealand who also has zero intestine
(she is Austin and Max's age and going strong), and about the many
more stories of thriving kids on the short gut wiki.
I remember how transformed we were during our Camelot months living with Christian's
family in Boston. For the family of this 8-week-old, I think
these two days rooming with Austin will mark their new era of hope.
Tue Mar 11, 2008
Maybe we're approaching this whole language-learning thing too
We've been trying to convince Max of the merits of K. So much of his
world would open up to him if he could say it: Nanny Kate, Aunt Katie
(who arrives next week), kitty cat, keys, car. Aside from briefly
toying with "Kiki,"
Max has other ideas.
Today he decides that Kate can go by "Gee." He calls her by this name
several times, as if trying to demonstrate how well it works.
He pulls another "bunny".
With speech therapist Beth, Max points to the monitor of his DVD
player, and articulates "video." We've never heard him attempt this
word or the "v" sound before. Versatility doesn't seem to be what he
is going for with his letter choices.
Who knows what he'll call the video tomorrow, and what that term might come to mean.
Last weekend, Max said "boojah" while pointing to carts at the grocery
store. When Randy asked him at tuck-in that night who giraffe loves, Max pointed to
himself, and answered, "boojah." We haven't heard "bunny" again.
Thu Mar 13, 2008
Our work is something else.
It used to be everything. Randy and I would take days off with
friends to snowboard in fresh powder, but 80-hr work weeks were the
norm, and had been since we met in grad school. Our one rule before
Max came along was no shop talk in the hot tub. That rule was broken
We still love our jobs. I'm more excited about my lab's research on cognitive
development than I've ever been. Randy and his group are immersed in
developing an innovative way to simulate how the brain learns. We're
planning the second edition of our textbook (which we once thought of
as our "baby"). We work when Max is with Nanny Kate, and while he is
sleeping. We take separate shifts with Max to protect our work
But the best part of our days at school is how exuberant Max is
when he welcomes us home.
If we had to make a new rule, it might be "No entire dinner
conversations devoted to cute things that Max did today." And that
rule would be broken often.
Sat Mar 15, 2008
At a play date with colleagues, Max learns a whole new meaning for one
of his favorite signs: rolling his fists around each other for Go go
go. The more impatient he is to get going (whether we're gathering
our things for a trip to the park, or sitting at a traffic light), the
faster he rolls.
Max is not so interested in the fact that Abram, who is his age, looks
like Randy did as a child. He is transfixed by Big
Max, who is 3 times his age. Big Max jumps large gaps between
boulders, zips down the spiral slide on his feet, and scrambles
along steep embankments behind the park. Our Max looks up at me,
beaming, and points to himself. He follows everywhere that Big Max
goes, barely tolerating the grasp of my hands that prevent him from
tumbling head over heels.
I can't stop smiling afterward, thinking about our not-so-little Max
pointing eagerly to himself. Go go go, fists whirling.
Sun Mar 16, 2008
Randy can't find his keys. The last time we saw them, he was
pooh-poohing my suggestion that letting Max run around with them might
be a bad idea.
Mon Mar 17, 2008
We're moving on to debates we're happy to have. Max's liver
enzymes are slightly better as of Friday's labs, which arrive this
afternoon. I credit the oral fish oil. A twice-a-day dose of .5 cc,
extracted from adult capsules, seems to work well for Max's digestion,
allergies, and ostomy bags. We can try further increases. Randy
credits the decrease in oral iron. Max's H&H continue to improve even
on reduced iron, so we may try further decreases.
We're scheduled for an ultrasound next week to check the blood supply
for Max's liver (a procedure he has rather enjoyed in the past), and to run
additional labs. I hope we can continue debating why he keeps
getting better for some time.
Tue Mar 18, 2008
The day Max was born, I
whispered to Randy, "Let's have another." I
felt guilty, like I was cheating on Max by turning my thoughts to a
second baby so soon. But I couldn't get over the love and light that
Max brought rushing into our lives, after my years of uncertainty
about whether I wanted to be a mom, and whether I would be a good one.
I just wanted more of what Max brought.
My whisperings came before the horror of the Hirschsprung's symptoms,
surgeries, and diagnosis. But they also came before we saw how much
more love and light Max brings each day.
Now we have the added thrill of thinking about him being a big
brother, welcoming his baby brother to the world toward summer's end.
We whisper our news, overjoyed, to the love and light of our lives.
Wed Mar 19, 2008
We've come to terms with many fears about Max. Our latest is the
silliest. When we tried to cut his hair during Nana's
last visit, she convinced us to let her enjoy his curls instead.
Another month of growth was enough to make us wonder whether Max would
still be cute without them.
At 2 am, Max sleeps through his cares in Randy's arms. He stirs,
emphatically signs truck, and goes limp again. Later, he points high
in the air, smiles, and says "Dada."
He is dreaming of trucks and helicopters. His curls sit in his trash
can. Still plenty cute.
Thu Mar 20, 2008
Max discovers "No." He was shaking his head and saying "Mo"
yesterday, but today he's got it down. I wonder about the timing.
Just beforehand, Grandpa sat at the breakfast table telling Max about
all the conspiracies he and his little brother can engage in against
their parents someday. But I'll
credit Randy with why Max has grunted assent for months before
turning to No.
Sat Mar 22, 2008
The number of people asking whether we still plan to move to Berkeley
is opening our eyes to just how crazy people think we are.
We won't move to Berkeley this fall. And we won't go to Berlin this
summer (a trip we started contemplating while driving home from the
airport after Paris).
But we won't rule out Berkeley for next fall, or England for next
summer (the other trip we discussed on that dreamy
drive home). You just never know.
But I hope we aren't nearly as crazy as people think.
Sun Mar 23, 2008
When Grandpa and Grandma first met
Max, he had just moved from the NICU into the longer-term care
area of the hospital, his home for the foreseeable future. They ended
up staying in a dingy hotel near the hospital. As we hugged good-bye
in the dimly-lit parking lot, Grandpa said, "It's sad." During later
breakdowns, my mantra was "I don't want it to be sad."
I got my wish.
Max shouts "GOAL!" and throws his arms above his head each time Aunt
Katie sets a ball in the foosball table. He giggles so hysterically
while throwing ping pong balls into the bathtub that Katie worries he
will wake Randy in a distant part of the house. Max methodically
carries the products of our family paper-airplane session to the
ficus, and holds them as high as he can stretch. Grandma realizes
that he thinks planes
belong in trees, so we store them there. Max doesn't understand
why Grandpa would ever want to stop having bowls enthusiastically
placed on his head.
Our good-byes are now a much happier kind of sad.
Mon Mar 24, 2008
Who do I want calling the shots at 3 am? On Easter Sunday, I'm glad
it was Randy. Max spent Saturday producing explosive, double-barreled
sneezes, while we tracked his elevated temperature. Over 100.5
generally guarantees at least 2 days in the hospital, on IV
antibiotics and waiting for cultures to tell us whether Max has an
infection in his blood.
He hasn't had one of those since before we moved to Boston.
His temperature never rose above 100.5 Saturday. Max would pause
after each sneeze to have his face wiped, then resume playing with
Grandpa, Grandma, and Aunt Katie. But at 3 am, he spiked to 101.
The source of the fever seemed obvious, and taking Max to the ER and
hospital-grade germs comes with its own risks. But line infections
can turn scary quickly. I'm not sure what my call would have been.
Randy gave Max Tylenol, stayed up until 4 to make sure his fever came
down, then woke at 6 to comfort him.
I was none the wiser until 7:30, when I read Randy's update and
checked on Max. He has been fine since.
Now we just need to see our hero through the cold he caught from his
very lucky son.
Tue Mar 25, 2008
We're postponing Max's liver biopsy and arguing about inflection
points. Both are good signs.
keep improving with today's labs, drawn during his hospital checkup.
Randy continues to credit the drop in oral iron. He focuses on an
inflection point in Max's graph, suggesting that his improvement has
sped up since we cut the iron completely last Wednesday. Max's H&H
levels are stable and normal and his iron stores look good, so we will
keep the oral iron out for now.
I continue to credit the oral fish oil, which we had upped slightly
last week and can continue to increase. Who knows whether there's a
true inflection point in Max's graph, or what kind of non-linearities
there might be in the relationship between treatment and outcome. We
indulge in the luxury of debating just how quickly Max is improving
and what it might mean.
GI Jason credits the drop in TPN calories. Max continues to grow
well, so he will now drop from 65% of his calories from
TPN to 55%. The expectation is that this drop will slow his growth, but he
has room to slow.
Max's liver ultrasound looks normal. He fusses through this procedure
for the first time (likely due to a missed nap), but manages to blow
the technician a kiss on his way out.
The one bad piece of liver news is that Max's platelets are low. We
hope this is just a lagging measure of the problem indicated long ago
by the more sensitive ALT/AST measures. Now that those
measures are improving, hopefully the platelets will follow.
We can hold off on the liver biopsy, because as GI Jason puts it, we
are no longer stuck.
Wed Mar 26, 2008
Max's surgeon is a perfectly nice guy. But we can't help never
wanting to see him again, especially now. If Max needs another
surgery soon, we may be to blame.
The port that goes into Max's stomach is leaky. It always has been.
We've dealt with it by applying dressings to give a tighter seal
between the outer part of the port and his skin. The first layer is
Transfer, which wicks leakage away to protect the skin. The next
layers are IV gauze, which absorb the moisture wicked away by the
first layer. We started with 2 of these gauze pads when we learned
this system (before Max had ever left the hospital). As the seal
loosened, we increased to 3 pads, then 4, 5, and finally 6.
The pediatric surgery nurse gasped when she saw our set-up yesterday.
Needing this many pads apparently suggests that the part of the port
inside Max's stomach has applied too much pressure to the stomach
lining, thinning it. Our attempts to tighten the seal have actually
The nurse thinks that Max will need surgery to create a new opening
into a different part of his stomach.
Even worse, she wants us to try to salvage the current hole using
silver nitrate. After Max's surgeries, I rank this treatment as among
the worst things he has endured, close behind the time he was clamped in a baby vise for a GI
x-ray in Pittsburgh and just above his month of epogen
shots. Silver nitrate is used to cauterize the granuloma or
tissue mass that can form around the hole into the stomach. It is
supposedly painless, but many nurses and parents interpret children's
screams as pain.
Over and over, I ask the nurse whether we must go this route and ask
Randy whether we can bring ourselves to do it twice a day. She says
yes, because this step is necessary to allow the hole to heal. He
says yes, because he has no idea -- somehow he missed the traumatic
silver nitrate episodes when Max's surrounding skin was badly burned
in the hospital.
So this morning and evening, Randy spreads a protective base of Ilex cream around
Max's port, then applies the silver nitrate precisely onto the
granuloma. He packs the area with Sorbsan, an
insulation-like wound dressing that promotes healing. Max watches his
video as if we're doing a routine bag change.
I am giddy with relief about how oblivious Max is to the treatment.
If he does need the surgery, he will be in great hands. But I hope
the next time we see Dr. Partrick will be at the hospital's summer
Thu Mar 27, 2008
Max was generous with his cold. He had only one day of major
symptoms, but managed to pass them on not only to Dada, but to
Grandpa, Grandma, Aunt Katie, and Nanny Kate.
He gives me a much nicer gift this evening. He walks out of his room
calling my name, and finds me mixing his TPN. He offers a container
lid displaying three thoughtfully-selected small blue toys -- a bird,
a rattle, and a foam square. His sweet gesture turns me to mush.
He doesn't seem to understand why I am still thanking him an hour
Fri Mar 28, 2008
Max has given up on car naps. This week, he demonstrates that after a
missed nap, he has no patience for: searching for eggs in the grass
(though he is otherwise happy to see cousins Maya and Mateo and
family), or several
hours of hospital appointments, or today, the Denver Auto Show.
The highlight is an encounter with a woman handing out toy trucks.
Randy and I are trying to determine whether we can bring ourselves to
trade in our grad-school-era Saturn sedan, for an SUV or minivan. If
we end up in one of these no-way-we'll-never-own-one vehicles, can we
still make fun of the other kind?
Sat Mar 29, 2008
The dreaded silver
nitrate treatment lasted for only 3 (barely-noticed) applications,
then Max's granuloma was gone. Now we wait to see if his stomach
lining thickens to create a tighter seal with the g-tube port.
Sun Mar 30, 2008
Our nesting instincts are taking a more rational form this
time around: storage. A shelf for "Max's" fleet of planes,
organizers of all sizes for medical supplies, a dresser for Max's
hand-me-downs. This has been our spring break.
This afternoon, Randy and I contemplate hallway tables on-line. Max
comes over to find out what's so fascinating. Randy rotates the
laptop toward him. Max views the display, then turns to us, his face
forming the most subtle possible expression of complete disbelief.
I have seen this look once before, after Randy
and I got engaged. My parents presented us with a unique
woodcarving displaying our names in Japanese. Baba described how she
traveled deep into the mountains of Japan to select each of the
hand-crafted letters from a remote artisan. Then, she stained the
letters herself before attaching them to the backing, carved in the
shape of a house. After baba finished her story, Randy proceeded to
stab a piece of melon from the fruit bowl in the center of my parents'
dining room table. As he brought the fork to his mouth, the fruit
fell unceremoniously onto the carving before us. Jiji's face
transformed ever so slightly into the most subtle possible expression
of complete incredulity.
When we see this look on Max today, Randy and I burst out laughing.
Max joins in, which makes us laugh even harder.
Little does he know how rational we're being, relatively speaking.
Max's pending arrival convinced us that we needed to move out of our
house for several months of renovations around his birth. A few hours
selecting the right hallway table is far more sensible. It will be
the perfect place for our hand-stained carving.
Mon Mar 31, 2008
I'm pretty sure there was a Brady Bunch plot like this, but it
involved a dog and a tidier ending. Randy's
keys have been missing for almost 3 weeks. When his family was
visiting, we got copies of the keys that could be copied. We made
extra for a decoy set, to give to Max in hopes of trailing him to
discover his secret stash (and perhaps Randy's sunglasses). Our plan
got as far as searching for a spare keychain, which we couldn't
locate. This morning, Nanny Kate finds Randy's keys deep in a planter
box. No other stash.
Tue Apr 1, 2008
Randy thinks my pregnancy hormones are making me emotionally
volatile. I think he should shut up and apologize.
Wed Apr 2, 2008
Max has been trying to leap out of his high chair. He is usually
locked in by its tray table, but I remove it for a minute each morning
while I detach his g-tube. When he tries to jump, I warn "Abunai!"
(Danger!) He gestures whiskers by his mouth, the sign for cat. I
eventually catch on to the fact that he is referring to a scene in a
book from baba. I ask him what chiisana
neko (small cat) runs in front of that is abunai. He pumps his
fists up-and-down as if steering, the sign for car.
If only this mishmash of Japanese, English, and sign would help Max to
appreciate that leaping out of high chairs or in front of cars is
dangerous in any language.
Fri Apr 4, 2008
Max is as smart as a dolphin. His motivations are just a little
This morning, he brings me one of his paper airplanes, badly ripped.
When I suggest that we tape it, he points excitedly to the tape
drawer. He opens the highest drawer he can reach, then I retrieve the
tape from the drawer above that. He exclaims throughout my tape job,
offering commands or feedback, I'm not sure. The repaired plane flies
An aquarium dolphin was once rewarded with fish for bringing trash
from the tank to the trainers. They eventually discovered that the
dolphin was ripping the trash into smaller pieces before bringing it
up, to maximize rewards.
Max retrieves the plane after its successful flight. He sits down,
rips the plane into 4 pieces, and jubilantly hands me the tape.
He's a little less deceptive than dolphins.
Sat Apr 5, 2008
But maybe, a colleague suggests, Max is dumber than a chimp.
like other kids. After watching an adult open a puzzle in an
inefficient way, chimps skip the adult's irrelevant steps when they
get a turn with the puzzle. But kids overimitate what the adult did,
copying the irrelevant actions that the chimps knew to ignore.
My colleague is suggesting that Max thinks the plane must be taped
before it can fly. I might be inclined to believe her, if Max hadn't
already logged so many hours flying un-taped planes. If he weren't
his toys around. (He even makes this flying sound when he sees the tool for smoothing
wood in his alphabet
cards. Confusion about words that sound like flying objects --
yes. Confusion about the role of tape in making those objects fly --
no.) And perhaps if I weren't quite so inclined to think of Max as
smart as a dolphin.
Sun Apr 6, 2008
No pain, no gain? Max's stomach lining seems to be healing -- we are
down from 7
layers of padding between his g-tube port and his skin to just 2
layers (one Mepilex Transfer, one IV gauze) and the Sorbsan wound
packing. But as we've reduced pressure from the port on his stomach
lining to allow it to heal, we've faced increased leaking from his
stomach and breakdown of the surrounding skin. Hopefully a bit more
gain will ease the pain.
Mon Apr 7, 2008
Nana's friend Suze gave Max a mama polar bear with two baby polar
bears. One of the babies has disappeared, gone the way of Randy's
All looks good in my detailed ultrasound this afternoon. I get
transferred from the specialized-care-just-in-case doctor back to our
beloved regular OB-GYN who
Max doesn't seem to feel our elation.
I've been reassuring him that the mama polar bear will be with both babies one
of these days. But for now, he seems content with one mama, one
Tue Apr 8, 2008
With language comes great power. Or at least great demands.
Max impatiently signs "truck" while watching his videos. With Curious
George, this is our signal to skip ahead to the construction site
episode. Max adds calling for "Bob" to his truck signs to request
a Bob the Builder video. When he got bored with Bob last night, he
asked for "Woody," of Toy Story. I knew he only wanted to fastforward
to the final scene where the toys race to catch the moving truck. I
suggested "Later." (This usually goes over better than "No.") Max
Wed Apr 9, 2008
When we witnessed Toshio being put in time-out, Randy and I thought it
was draconian. We were tempted to sneak over to conspire with him.
Max throws his first official temper tantrum. It begins when his
video is turned off after a bag change this morning, and continues off
and on until his nap a couple hours later. We've wondered how much of his
fussiness and clinginess the last couple days reflects irritation from
leaking stomach acid as we work through his g-tube issues. But
today's indignant hollering seems more like a garden variety temper
tantrum -- full throttle protest of no more Toy Story.
If Junko and Dave sensed our judgment, I'm sure they were thinking,
Thu Apr 10, 2008
Max is angelic today -- happy, playful, talkative. He even makes a
point of putting his toys away after playing with them. Time-outs
seem draconian again, back in the "Us? Never." realm of SUVs
Fri Apr 11, 2008
Max won't remember any of this. Not one bit.
Nora Newcombe reminds of us
this fact in her department talk on infantile amnesia, the lack of
autobiographical memories before age 2. In fact, several years will
pass before Max forms memories with any kind of detail like adult
We've read and taught about this phenomenon, and I've even speculated
about its causes in my scientific writing. But we've never been quite
so shocked by the thought of it.
Sat Apr 12, 2008
Like many families, Randy and I think about how much it would have
meant to catch
a glimpse of our current lives back when Max was still in the
hospital. I'm not sure we would have believed today.
We head down our street against a gusty wind. Randy walks, I waddle,
and Max rides his tricycle. Well, mostly he sits in his tricycle,
feet dangling, turning the handlebars. Randy pushes the trike from
behind with a pole for this purpose, balancing the front tire in the
air to thwart Max's attempts to steer into bushes and parked cars.
When we arrive at the local school, Max and I kick the soccer ball
around while Randy preps the stunt kite. We bought this kite after I
traveled to Sweden during grad school and learned about
kitewings, which harness the wind to send skaters zipping across
frozen lakes, and after watching in awe as kitesurfers leapt
off waves in the Outer Banks. We had thought we might try our own
version, on rollerblades in Pittsburgh parking lots.
But the kite sat neglected until a couple months ago. Just
the right winds this afternoon allow for its first real flight. The
kite whizzes up like a rocket, then zooms around the sky, diving and
soaring, careening and floating. After the dramatic show, as we prepare
to head home, Max walks over to the stadium steps. I try to talk him
out of it, but he insists on climbing them, then running across the
baseball field that we discover at the top, then hiking up a steep
trail behind the field. We enjoy a roundabout walk home through
unexplored neighborhoods, with Max giggling as he races down hills and
tries to direct us up others.
While buying that kite years ago, or visiting our baby in the hospital, we
never imagined such fun.
Sun Apr 13, 2008
Another thing we've been meaning to do for years is check out the
Boulder Reservoir. The fact that the Boulder model airport is located
on it gets us there this afternoon for the first time. Max's fleet
sits in the car while we watch model planes and helicopters 5 times
the size, performing 10 times the stunts. Entertaining -- but not, it
turns out, as endlessly so as throwing rocks into the reservoir.
Mon Apr 14, 2008
A 9-month-old boy boards a LearJet for Boston this morning. Carter
will be their first Omegaven recipient from Dallas. When the staff at
his local hospital asked what all the Boston buzz is about, Carter's
mom showed them the
before- and after-Omegaven photos of Max. I hope they'll be home
soon, sharing beautiful photos of their own.
Tue Apr 15, 2008
Max was the only name we considered. Randy suggested it the day we
learned we were having a boy, and I liked it. We didn't get any
objections. This time around isn't as easy. We float idea #2 by baba
and jiji today. It turns out to mean "animal intercourse" in
Japanese. Well, there's still plenty of time. Which was exactly
their reaction last month to idea #1.
Wed Apr 16, 2008
Friends say they can't imagine all we've endured. They fell apart
when their kids had tubes put in their ears for ear infections. The
thing is, I would have fallen apart too.
Max falls headfirst into the lower step of the mosh pit this morning.
It seems like a regular toddler tumble, but when I pick him up, blood
is streaming from a gash in his forehead. He is screaming.
If I've gained any wisdom from all our experiences with emergencies
and bleeding and fear, it fails me now. All I can do is tell Max over
and over that I'm sorry and he'll be okay, as I run with him in my
arms to wake Randy.
Max calms within seconds after Dada gets the band-aids on to stem the
bleeding. I try to rock and soothe him as I continue to apologize.
He wriggles away to play, oblivious to the blood on his hands as he
operates his dump truck.
He points to the floor to show Dada where it happened.
I ask Max for a hug, which he follows up with a kiss. He knows who
needs reassuring here.
I try to return the favor when he's restrained on the procedure table
at our local medical facility a couple hours later. He keeps crying
for mama and dada. We tell him we're right here. He calls for baba
and jiji. We talk about how much they love him, and about everyone
else who does too.
I'm not sure how much he hears through his yelling. He fights every
one of his 7 stitches. He should be plenty numb with anesthetic, so
we hope he is just fighting being held down.
As Dada carries him out afterward, Max calms within seconds again. He
blows good-bye kisses to the nurse.
Randy says he's glad this happened under my watch, since there's no
second-guessing whether I was careful enough. He asks how I would
reassure him if he had been the one.
The fall was a fluke. Max has been walking down the steps into the
mosh pit for the last 3 months. He has been sticking the landing for
the last 2 months, and the soft mat is there to catch him if he
doesn't. But today, he slipped in his footed pajamas and turned as he
fell, so that instead of falling forward into the mat, he hit his head
on the step -- for the first time, after months of smooth descents.
I know Randy is trying to make me feel better. It helps a little.
The best magic is Max's kisses.
Thu Apr 17, 2008
When baba and jiji see Max's super-sized bandage over video skype,
they immediately suspect a swinging accident. (Upon witnessing
pushing during their last visit, they had to vacate the scene to
calm their racing hearts.) Toshio's family guesses a rock-throwing or
Max points to his forehead. He gets what we are talking about. He
doesn't get why we are still talking about it. I rave about what a
great job he did at the doctor's and how proud we are of him. The
nurse recommended this approach to try to reduce how traumatized he
might feel. Max gives me an indifferent look, as if to say, "Get over
it, mama." I'm working on it.
Fri Apr 18, 2008
This week's labs are the opposite of what we expect.
Max's last labs required 3 times the blood he normally gives, to test
a variety of potential causes of elevated liver enzymes. (All those
results look fine.) So we expect a drop in his otherwise gorgeous hematocrit
and hemoglobin. But they continue to rise nicely.
We also expect continued improvement in his ALT/AST. All the theories
about why they're improving are still being acted on: reductions
to TPN, maintaining oral fish oil, and avoiding oral iron. But both
of the liver enzyme measures worsen significantly with this week's
Max's platelets are still on the low side, but have improved slightly.
Randy and I have only our uninformed speculations at this point. All
revolve around the hope that these elevated enzymes are a blip. Maybe
Max's cold taxed his system. Or he's got bad
bugs brewing in his distal bowel, which his system periodically
fights and clears. Or his system was taxed by the production of all
those red blood cells after the big lab draw. Maybe he's dehydrated
(his outputs have been high the last week), which may artificially
raise these numbers. Or there's something screwy with these labs,
because they were drawn an hour after his head gash. (Nurse Gail was
already on her way when Max fell, and his wound had temporarily
clotted when she arrived.)
We don't expect our speculations to amount to much. We know not to
expect much of our expectations
Sat Apr 19, 2008
Since seconds after his final stitch was sewn, Max has been acting
like nothing happened. No signs of pain or discomfort. No fear of
falling, even with me catching my breath and jumping in whenever he
gets near the steps. No interest in his super-sized bandage.
We have been hoping this means that all is fine underneath. Today is
our day to clean and assess the wound and replace the bandage. We
brace ourselves for bruises and swelling and pus. But I slowly peel
back the bandage to find only stitches and dried blood.
I want to kiss it. Instead, I swab the area with dilute hydrogen
peroxide, coat the wound with polysporin antibiotic, and affix a new
Randy can't bring himself to look. Gravity-defying
adventures, yes. Stitches in flesh, no.
This attitude comes in handy at a party up the canyon this afternoon.
Max discovers an activity that is just as fun as throwing rocks in the
Boulder Reservoir -- throwing rocks in the Boulder Creek. Descending
down the steep embankment from the party to the water is half the
Mon Apr 21, 2008
People have asked whether Max will have a permanent scar. We'll see
what the doctor says when she removes his stitches this week. I don't
think his modeling career in
miracles of medicine is in peril. We grant permission today for a
Doctor of Pharmacy student to use Max's before
and after photos in a class presentation on Omegaven. These two
pictures are worth way more than 2,000 words. Future photos will be
just as valuable -- scar or no scar.
Wed Apr 23, 2008
We didn't expect to face the "T" word again so soon.
Most of our "blip" theories about Max's worsening
ALT/AST have been ruled out. His labs suggest he isn't
dehydrated. GI Jason says that a minor cold like Max's shouldn't
raise the values this much, nor should production of red blood cells
or a head gash.
Bugs in the distal bowel could be a factor. We will resume gentle
flushes, using saline instead of antibiotics. The hope is to move
things through the system to interrupt whatever's brewing, but to
avoid the cycles of dependence and possible superbugs associated with
antibiotics, and the unknown consequences of having them sit
But these enzymes have been elevated for a long time. Although the
recent rise might be a blip, the brief improvement before that could
be the real blip. Max's liver may be struggling. GI Jason suggests
that he may ultimately need a transplant.
TRANSPLANT. We have been waiting to see whether Max's intestine will
adapt to the point that he can rely on it instead of needing a
transplanted one. Our plan is to wait for years. We haven't been
thinking about a liver transplant at all.
Maybe we won't need to. We will see what happens with the next set of
labs, and reassess what seems more real -- enzyme improvement or
worsening. If those labs are discouraging, we will proceed to a liver
biopsy, which should provide the most accurate picture. The other
liver indicators aren't perfect measures. We will focus on the
optimistic read of this fact before confronting the "T" word: Things
may be better than we think.
Thu Apr 24, 2008
When we met with landscapers yesterday, they talked about creating a
nice back yard space for the children to play in.
We can't quite wrap our heads around the idea. Tonight, Max reaches
to Expect When You're Expecting (which I just cracked open for
ideas on relieving seasonal allergies, after fanatically tracking my
pregnancy with it week by week with Max). Randy shows Max the
drawings of moms with babies inside. We caress my belly. Max looks
back to the book, and says "mama."
So we break out Hello
Baby!, which tells the story of a little boy, with a red airplane,
becoming a big brother. Max is transfixed, and not just by the
We know not to count on life unfolding like in books, even if they're
called "What to Expect." Our months of home renovations started with
just wanting a place for a stroller, and visions of arriving home with
our brand new baby. Now we just want a back yard that's safe and fun
to run around in. For the children.
At tuck in with Randy, Max points toward where I sit, in my usual spot
in the family room. He says "mama." He seems to think of my belly,
and brings his rounded hands together to sign "ball." We can't stop
ourselves from forming expectations. But we know things can work out
well even when they don't work out as expected.
Fri Apr 25, 2008
I reassure Max that stitches come out a lot easier than they
go in. I fail to realize that removing his stitches also means
yanking off his scab, and that his struggling could mean getting
jabbed with scissors near his wound.
He doesn't seem traumatized by what happened here last time. I have
continued to tell him what a good job he did, despite Randy's cracks
that I am passing down revisionist history. Max happily walks into the
medical building, plays in the waiting area, and enters the exam room.
He starts protesting only when the nurse closes the door.
But once again, after the fresh blood from the scissors-jab is wiped
from his face and a new band-aid is applied, he is fine within
seconds. If he does end up with a physical scar, the nurse says it
will be barely noticeable, like the paper thin line she shows me by
her eye. Definitely easier out than in. Hopefully Max's next visit
-- to hear the heartbeat in mama's belly -- will be even easier.
Sat Apr 26, 2008
mom has great timing. Just before GI Jason brought up the "T"
word, she sent an update. Christian is doing so well that his
immunosuppressant has been lowered significantly, and his transplant
team will now see him only every 6 months. Of course, he can hardly
be considered typical, with the path he has paved in the transplant
world. But he also taught Max a thing or two.
Sun Apr 27, 2008
At least our plants have never looked so good.
Nothing seems to be working in our day-to-day cares. Randy and I feel
like we are spending all of our precious time with Max doing bag
changes. His stoma is periodically retracting beneath his skin, which
leads to leaking underneath his ostomy bag. This kind of retraction
is apparently not uncommon, and there are products designed to deal
with it, but we haven't mastered them yet.
g-tube area had been looking beautiful -- the surrounding skin has
healed thanks to Ilex, his stomach
lining seemed to be recovering as we reduced pressure on it, and we
were gradually reducing the amount of Sorbsan wound packing. We
thought we might avoid surgery. Now it's a leaky mess again.
Max hasn't seemed to notice. He is doing his part for the plants.
Every Saturday morning, he signs "water" and pulls out the watering
can to remind me that it's time. He trails after me as I refill the
can, then directs me to the plants that need water. He collects dead
leaves and throws them into planters. He helps tip the can to give
the plants more water, and points out where I splash some on the
Tender loving care should always be so effective.
Mon Apr 28, 2008
The skin under my thumbnail is bleeding again. This is what happens
when I hook up the TPN -- Randy's job. I've tried it only briefly in Boston, and then the night
that Max bled for hours in his crib.
There's nothing like the scare of our lives to send us back to our specialized routines. Randy has
still never injected additives into the TPN bag.
But he may go to California Friday -- for just a day trip, but the
first solo trip for either of us since Max came home from the hospital. Paris
as a family felt much more manageable.
I want him to go, to start an exciting collaboration for his company.
So I am re-learning the evening hook-up. We
triple-check and tape connections to avoid a repeat of what
happened last time.
Max cheers me on, smiling and calling my name as he watches a role
reversal that seems to qualify as serious entertainment.
Even if Randy's trip doesn't come together, it is providing the
kick-in-the-pants we need to train each other on our routines, and to
create a care notebook
detailing Max's procedures. And to toughen up my thumbs.
Tue Apr 29, 2008
Training Randy to mix the TPN isn't quite as fun as Randy training
me to hook it up. He blames the exasperated teacher. I blame the
impetuous student throwing away syringes and vials whenever fancy
strikes, instead of when they're no longer needed. Max probably blames us both. He is considerably
less entertained by tonight's role reversal.
Wed Apr 30, 2008
Our role-reversal procedures feel remarkably smooth already. At least
that's what I think as I prime the Omegaven
tubing tonight. I watch the miracle fish oil flow down the line,
making its way toward the curly extension tubing. But the curly
extension tubing is for the TPN, not the Omegaven. I've swapped the
lines. The mistake surprises me, because it's one I know to
double-check for. But it's easy to fix, and to triple-check for next
Randy flies to California Monday. Now that this possibility has
opened up to us, I can't wait.
Thu May 1, 2008
I forgive jiji and baba. Junko's baby book is bulging with photos and
clippings and whatever else goes in bursting baby books. I wouldn't
know. Mine has a few photos. I'm not sure if Naoko got a baby
We systematically documented my belly's progression throughout my
pregnancy with Max. This afternoon, we take our first baby brother
belly photo, more than halfway through my pregnancy -- and only as a
prop for Max at that.
Fri May 2, 2008
is back on the scene, barely. I gave Max a few drops Wednesday, and
have added a few drops more each morning since, after hearing that a
girl who initially reacted badly to the full dose eventually tolerated
it through gradual increases. Em is 13, and organized a boycott of
Quizno's in protest of an ad they ran making light of people on IV
nutrition. Her mom has great stories about what a spitfire she is.
For now, we'll focus on the one about her ALT/AST improving
Sat May 3, 2008
Max is done sleeping with his stuffed animals. For months, he tossed
them from his crib only when he was ready to get out in the morning.
Now he tosses them at tuck-in, before we're even out the
door. I was thinking the crib just wasn't big enough for everyone.
But Auntie Naoko suggests an alternative interpretation after arriving
from LA and observing Max over a couple hours this afternoon: He is
just too excited about throwing.
Sun May 4, 2008
Now we can't wait for ursodiol to exit the scene.
After 2 days of low-dose sugar-free ursodiol last week, Max had a
small spit-up that we didn't think much of. After 3 days, he had an
unusually large spit-up -- the kind we haven't seen since... well,
since he was last on ursodiol, a couple months ago. We stopped giving
it then, yesterday. He has continued to have small spit-ups through
the weekend. I think the ursodiol took a while to clear out of his
system last time too.
We may try switching back to the sugar version at some point. We
don't remember it causing him to spit up, but he was also taking in
less food then.
For now, maybe we'll shift our focus to all the skepticism out there
about whether ursodiol really does anything anyway.
Mon May 5, 2008
Randy asks why I sound so happy when he calls from San Francisco.
It's just a day
trip, but it feels like a turning point for us, like Paris -- even
if we'll be turning in a completely different direction in a few
After several off days (probably from the ursodiol), Max sleeps
soundly overnight, during his afternoon nap, and soon after being
tucked in tonight. I feel empowered by managing all of his
procedures. Kate puts in 9-hour day to make it possible. Randy
starts the collaboration he has been dreaming about.
Max is a little less giddy about it all. When he runs to our room to
wake Randy this morning, he finds that he isn't there, for the first
time ever. He isn't too distraught to taunt Neko instead, and to
proceed to his usual happy day with Kate. But when the landscaper
drops by in the afternoon, Max seems uneasy. He runs to me, pats my
belly, and says "Dada." He keeps his stuffed animals in his crib with
Even a day trip can make the heart grow fonder. I can't wait for Max
to run to wake Dada tomorrow.
Tue May 6, 2008
Max may be thinking that Randy should leave town more often -- as long
as he follows it up with a day like today. The toy plane from the
airport would have been enough. Max flies it around the family room,
the front yard, the back yard. He whooshes as it flies, and protests
"Noooo" when he touches it down to the ground. He clenches it in his
hand while he drinks from his cup. He eventually brings the plane
over so I can touch it, never loosening his grip.
Then an even better gift shows up. Cousin Toshio and his Dad are back
in town for a couple weeks, between living in Japan and Germany. Max
follows Toshio all around the front yard, the garage, the back yard.
Toshio seems just as enthralled with Max. "Look at him kick the
ball!" "See how he follows me everywhere?" "Hey, he called you
'Dada!'" Randy claims that Max has always called him that, but Toshio
reminds him that Max was once in the habit of
calling him "mama".
Our hearts grow fonder still. Welcome home, Dada.
Wed May 7, 2008
We're getting strong vetoes of our ideas for baby names. If only
this were our secret.
Thu May 8, 2008
When we saw the movie Juno over spring break, I wondered if there were really
once a time when I could watch a birth scene without bursting into
At our university's convocation this morning, the student speaker begins by profusely
thanking her mom and dad for all their love and support. I think of
Max getting to this point someday. I wonder if there were really once
a time when I could attend graduation ceremonies without risk of tears.
Fri May 9, 2008
Max still gets anxious when the door to an examining room closes.
Thankfully, this afternoon he isn't enduring stitches, in
-- just confusion over why mama, dada, baba, and Naoko are so
fascinated by fluttery swishes from mama's belly.
Sun May 11, 2008
The weekend takes our minds off of Max's labs.
Toshio celebrates his birthday with a party at the zoo. Seven years
is old enough -- and maybe Max is now old enough too -- for Toshio to
excitedly introduce his cousin to his friends. Max still shows more
interest in the vehicles than the animals, but he unites them with an
offer of his toy truck to a bearded dragon.
Mother's Day brings another round of rock-throwing
at the reservoir, between feasts of crepes for brunch and a picnic
of leftovers from Naoko's week of cooking.
Max's lab results arrived on Friday. His ALT/AST are slightly better,
his platelets slightly worse. These variations could all be in the
noise, with no
real change -- certainly not the radical improvement that would
help us to postpone a liver biopsy. The procedure is scheduled for
the end of the month. We have one more set of labs to draw before
then, and hopefully a lot more fun with Max to help keep our minds off
Tue May 13, 2008
Randy pounds his fists into the couch in an outburst of frustration
with his grant-writing process. It's an unusual sight. I watch for
Max's reaction, then follow his contagious lead. We giggle
conspiratorially, with new fits starting up after each of my best
imitations of Dada. Randy eventually joins us.
Fri May 16, 2008
Like brother, like brother. Max kicked and kicked when Randy and I
saw the Colorado Symphony Orchestra performing pieces from Pink Floyd
a few months before he was born. Tonight, Randy and I celebrate a
belated Mother's Day with Nana, at a concert that NP
Kristin is singing in. The music is resounding, haunting,
beautiful. Kick, kick, kick.
Sun May 18, 2008
Max is our explanation and our excuse at a 1940s party this afternoon.
The beloved OB-GYN who welcomed
him to the world is celebrating his fortieth birthday. Max is how we
explain why we're here. Sitting on Dada's shoulders, he is also a
good excuse for why we're such awkward swing dancers, despite an
impromptu lesson from friends
Marie and Laura at another
party yesterday, plus some last-minute YouTube
browsing, and the best efforts of the dance instructors on hand. Our
rhythm seems to get lost somewhere among the expanses of my belly and
Randy's zoot suit. Whatever the problem, Max coaxes us from the
dance floor so we can watch him chase bubbles and toss his
fedora at every opportunity.
Tue May 20, 2008
We didn't think anything of Max's first two liver biopsies. I even
forgot about one of them in summarizing his
But those were the days when we had yet to bring him home from the
hospital, when a nick of the liver felt almost negligible in the
context of countless procedures
during a jam-packed week in Pittsburgh or a major surgery to remove his distal
Now, almost 10 months have passed since Max
was in the hospital for anything other than a pretty routine
Nanny Kate asked about the
biopsy, scheduled for next Thursday, after overhearing us
discussing it last week. I hadn't mentioned it to her because I'm
trying not to think about it. Randy hadn't mentioned it because he
isn't thinking about it, given that the procedure is fairly routine: a
small incision, under local anesthesia with light general anesthesia
just to keep Max still, with us likely returning home that day or the
Maybe the real difference is that the earlier biopsies were performed
when we were accustomed to wild swings in our sense of how Max was
doing. We haven't faced one of those in a while.
Wed May 21, 2008
We don't know how we'll celebrate Max turning 2 in a week -- probably
belatedly, after we get through the biopsy that we're not thinking
Thu May 22, 2008
We're not the only ones who didn't expect to hear the "T" word anytime
soon. The Boston transplant team brought it up with Carter's
family last week, when they discovered that his liver might be
struggling too much to allow Omegaven
time to do its thing. Now Carter is recovering from a multivisceral
transplant (new liver, spleen, stomach, intestines, and pancreas),
which he received two days ago.
The swings we're bracing for aren't that wild.
Fri May 23, 2008
Max vomits all over Randy tonight. The
sugar version of ursodiol is no good either. We tried a few drips
of it Tuesday and Wednesday, then stopped after Max spit up Wednesday
night. Now we're waiting again for it to clear out of his system.
Sat May 24, 2008
I'm happy to trade our plants
looking so good for peace of mind with Max's cares.
As his liver biopsy looms,
surgery to fix his g-tube seems less likely. We haven't had
problems with it leaking since we switched from Sorbsan wound packing
(which comes in bunches like cotton candy) to
Aquacel (which is made from the same material, but comes in a more
uniform ribbon format that can be measured out more reliably).
And, after weeks of messy experimenting and 2 am bag changes involving
the whole family, we have finally found a convex ostomy
product that seems to work reliably with a retracting stoma.
At the same time, Max has lost all interest in watering our plants.
I'll handle them solo with my newfound time and restedness.
Sun May 25, 2008
Max knows what he wants. And usually, he knows how to get it.
This morning, he wants to sit in my lap. He starts to nestle into
position, but finds that he no longer fits. He stands, repositions
himself, then tries to shimmy his way in. After several attempts like
this, he settles for a more forward position on my legs, resting
against my displacing belly.
Tonight, he wants to throw rocks in Dick
and Jan's pond. He starts off the evening this way, then works on
convincing Jan and Dada to make additional excursions back to the
water. Luckily, they're positioned to be more responsive to his
Mon May 26, 2008
I know it's presumptuous to offer suggestions for Max's birthday.
We've received enough gifts for a lifetime. Max will be forever
spoiled with hand-me-downs from cousin Toshio, and Randy has plans in
the works for a big train set (which I bet he'll share with Max). But
recent queries have prompted us to think about old and new ways to
give, for anyone who might be interested:
Helping to save lives seems like a beautiful way to celebrate Max's
first 2 years. The one gift we wish directly for him is a healthy
liver. We hope we can toast to that, along with his second birthday,
not too belatedly.
Donate blood: This video celebrates the lives saved, but also
acknowledges children dying. (It was made by an amazing mom in memory
her sons -- Sam died 3 years ago, and Zach died last November.) Randy
and I find it a bit jarring to see Max's cameo in the midst of it.
But we're glad to be a part of this effort, which has encouraged
first-time and long-ago donors alike.
Support Omegaven research: Families are still struggling to get
it. Research could help increase its availability.
- Become an organ donor.
Tue May 27, 2008
Bad news makes for an easier decision. Max's liver numbers continue
to worsen with today's labs. We start talking with him tonight about
trip to the hospital.
We also start computing correlations. Max's hematocrit has been
improving as his liver enzymes have worsened. The correlation
between the two, over the 7 months since we started epogen,
is .8 to .9 -- higher than anything we see in our research. Our wild
speculation and hope is that the increased red blood cell production
is taxing his liver, and that when his hematocrit eventually
stabilizes, his liver will improve. (The main time his enzymes
improved recently was when his hematocrit was the most stable.)
Puder discourages his patients from getting transfusions or
treatments to increase hematocrit, so this could explain why none
of the Boston kids show elevated liver enzymes.
As usual, our speculations could be all wrong. But they provide
comfort as we head into biopsy.
Max's First Year,
Max's Third Year
Please keep your emails coming! We can't always respond, but your
support and updates from the outside world have really helped to keep
Check back soon for updates and photos.
Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).