Max Munakata's trip to Paris
(from its conception)
Sat Apr 14, 2007
We need a reality check.
The day we flew home from Boston brought an interesting confluence of
events. I received an invitation to speak in Paris this fall, a
French colleague in Denver emailed to say that she would be our
personal guide should we ever end up in Paris, and Max showed off his
wildly good traveling skills. I planned to decline the invitation,
but now we're actually contemplating making a family trip of it.
The idea is not dismissed as completely crazy when we float it twice
today. Granted, the first time, over brunch, is to a 15-year-old
Belgian friend who traveled here solo to spend 3 weeks as an informal
exchange student. And the second time is with Junko, Dave, and
Toshio, who are preparing to summer in Germany and then take a
sabbatical in Thailand. It's a pretty receptive audience for the
simple idea of a few days in Paris as a family, with some pumps thrown
We may yet realize this idea makes no sense, that our expanded sense
of what feels manageable has transcended the boundaries of reality.
But it's fun to think about strolling the Seine with Max in the
Thu Apr 19, 2007
You can't judge a book by its cover. Or by its title, which is often
all baba has to go on when ordering Japanese books for her grandsons.
Toshio was the recipient of "Otousan" (Dad), which sounds like a
nice enough children's story, but actually tells the sad tale of a boy
after his mother dies.
"Norimono Ippai" (Lots of Vehicles), which Max picks for the first
time this morning, turns out to be a safer gift. All modes of
transportation are rendered, looking remarkably cute with just the
addition of eyes. Max has ridden in most of the vehicles that appear
early in the book (jidousha = car, takushi = taxi, kyuukyuusha =
ambulance). I wonder if later vehicles will provide the opportunity
to talk about things he might ride in for the first time in Paris, but
it turns out to be unlikely (shoubousha = fire engine, gomi
shuushuusha = garbage truck, kamotsusen = cargo ship).
No one has balked at the idea of us going to Paris. We realize that
the head-shakers might be keeping their thoughts to themselves. But
so far, most responses have been of the ooh-la-la variety -- including
among Max's doctors, as well as from Ellie's mom, who knows just how
many hours and suitcases and plans are required to handle all the
pumps and syringes and bags. We feel encouraged enough to start
referring to the shinkansen as the TGV in future readings of Norimono
Tue Apr 24, 2007
Planned hospital visits are far less stressful than unplanned ones.
We made a planned trip yesterday to pick up Max's first batch of
Omegaven shipped to Denver. Everything is now in place for us to
continue his treatment here. Exciting, and for me, relieving. Of
course, Randy never worried about the delays, because there was no
point to worrying.
Today brings an unplanned trip to Children's, and a different kind of
excitement and relief. The day starts in a routine enough way. I am
heading out the door for a dentist appointment, leaving Max in good
hands -- not just with Randy, but also with PT Betsy, OT Judy, and
case manger Laura, who are here for Max's semiannual assessment. But
as Randy tries to "DC" Max (i.e., to disconnect him from his pump),
blood starts dripping onto the dining room floor. Max's broviac --
the heavy-duty IV responsible for delivering most of his nutrition and
now his fish oil -- has broken. His blood is now reversing out of
We clamp the broviac above the break and head to the hospital. The
surgery to replace a broviac is minor -- this is the surgery Max had
just before we left Pittsburgh (when his broviac got dislodged from
its insertion point at his skin) and just before we left Denver for
Boston (when his broviac got clogged by an antibiotic). But I don't
want to face signing another round of consent forms with a surgeon.
It's old hat, I know, but I just don't want to hand Max over again.
It seems harder as he gets older, and grows more capable of calling
for us (well, for Dada) and signaling that he doesn't want to leave
It turns out that he doesn't have to. The broviac does not clog
during our 45-minute drive to the hospital and the 45-minute wait
there. (Clogging from blood clots is a risk if you aren't able to DC
properly). So the broviac can be repaired rather than replaced.
Randy and I entertain and feed Max during this straightforward
procedure. We're good to go while the forecasted snow dump is still
coming down as rain.
This simple outcome brings us enormous relief, but also pause for
thought about possibilities like Paris. It's not clear why the
broviac broke -- these things can just happen from wear and tear.
Nurse Stephanie, who repaired the broviac, points out that we could
certainly manage Paris if we travelled with a nurse. "Bring me!" she
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.
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
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.
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 since.
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.
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.
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
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 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
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.
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.
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.
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 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.
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.
Mon 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
to 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.