Maxwell Charles Munakata
A short gut, a long road, a full life.

Max

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 Ellie's lead):

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 backpack.

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 Paris.

Tue June 5, 2007

Ellie's family calls it the short gut cha-cha: 2 steps forward, 1 step back.

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.

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 Nanny Kate's.

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 1.

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 antibiotics.

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 Boston.)

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, off!).

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 10:30.

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 Paris.

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.

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 consideration.

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 moms.

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 time.

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 at check-in.

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 intestinal obstruction.

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 good sign.

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 to bed.

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 revision.

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 tomorrow.

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 prolonged stay.

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 bizarre.

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 tomorrow.

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 things.

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 anything.

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, beaming.

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 him again.

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 day's end.

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 know Omegaven would do its thing. Those old photos remind us about all the uncertainty we had for Max, 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 to her.

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 blood.

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 episode again.

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 take-out.

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 morphine here.

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 home.

Randy, Max, and Dr. Partrick remain unconcerned. I can't wait to join them.

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 more variable.

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 descriptions either.

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 theories.

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 meetings early.

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 him.

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 uneventfully.

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 mysterious signs.

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 end.

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 Max.

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 sites to:

It may help if you describe these sites using the key terms as listed above.

No word back from Oprah.

Tue Aug 21, 2007

Now we're dancing the google cha-cha.

On Eliana's great suggestion, I edit the wikipedia 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 early 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 wiki:

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 inspiration.

Please spread the word if you can.

Sun Aug 26, 2007

The media 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.

The google 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 front-loader.

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 sites, so our google 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 allergist.

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 alarms.

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 little.

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 about it.

As usual, we're not alone. Randy and I are following the pages of advice on oral 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 LA).

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 familiar arms.

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 to risk of Chagas' 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 help.

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 trip.

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 Avenue Segur.

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 ascent.

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 door.

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 system.

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 sweet.

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 the city.

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 language.

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 untethered window.

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, first thing.

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

"Flashbulb" memories for significant events are apparently less accurate than we think.

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

When 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 "Mama".

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 than survived.

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. The 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 the 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 largely pain-free.

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 functioning.

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, and survived.

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 blood.

We had predicted that Max's broviac tip would break around Halloween, based on it breaking at the same point 16 weeks ago and 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 too.

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 the short 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 every day.

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 find 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 opens.

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 chasing.

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 injury.

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 news.

The bad news is that he is still vomiting, almost 2 weeks out from his last epogen 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 wrestling.

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 weekend.

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 it.

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 days.

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 give.

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 Randy proud.

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 them again.

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 year.

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 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.

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 cycling 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 procedure.

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 mine."

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 harder.

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 enzymes.

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 much longer.

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 delights.

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 involve Max.

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 today.

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 else's.

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 count:

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 just looking.

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 showing that fish 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 him.

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 setbacks.

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 again.

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 other kids.

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 his production.

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 just suggested.

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 planes.

I couldn't relate to the O'Reilly's vehicle lust. I may need to work on this.

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 elevated ALT/AST:

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 nausea.

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.

Flushing 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 later.

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 then either.

Austin's 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 watching 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 better.

Also, his 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 "mmmma ma."

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 for Max.

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 helicopter shots.

Sat Feb 16, 2008

It's all fun and games until you're picking through clumps of sopping wet toilet paper.

Max's bathtub 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? "Boo."

Mon Feb 18, 2008

Cousin Toshio is unimpressed, over video-skype, by the story of Max's helicopter 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 antibiotics.

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 Nalgene bottle.

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 grow.

Mon Feb 25, 2008

Puppy dog pajamas make us realize tonight that we still struggle with the past.

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 bag."

Thanks to 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 tonight.

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 names.

"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, aka NP 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 shoot sometime.)

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 logically.

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 often.

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 time.

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.

Max's ALT/AST 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 Mepilex 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 loosened it.

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 reunion.

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 later.

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 different.

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 great.

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.

Just 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 always whooshing 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 sunglasses.

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 delivered Max.

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 baby.

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 replied, "NOW."

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, "Just wait."

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 and minivans.

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 memories.

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 Randy's wild pushing during their last visit, they had to vacate the scene to calm their racing hearts.) Toshio's family guesses a rock-throwing or helicopter incident.

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 labs.

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 either.

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 bandage.

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 fun.

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 intraluminally.

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.

Children!

We can't quite wrap our heads around the idea. Tonight, Max reaches for What 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 airplane.

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

Christian's 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.

Max's 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 floor.

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 time.

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 book.

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

Ursodiol 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 significantly.

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 months.

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 him tonight.

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 tears.

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 or out -- 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 of them.

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 first year.

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 intestine.

Now, almost 10 months have passed since Max was in the hospital for anything other than a pretty routine appointment.

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 next.

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 about.

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 wants.

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.

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 Thursday's big 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.) Dr. 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


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Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).