Max Munakata's trip to Paris
(from its conception)

Sat Apr 14, 2007

We need a reality check.

The day we flew home from Boston brought an interesting confluence of events. I received an invitation to speak in Paris this fall, a French colleague in Denver emailed to say that she would be our personal guide should we ever end up in Paris, and Max showed off his wildly good traveling skills. I planned to decline the invitation, but now we're actually contemplating making a family trip of it.

The idea is not dismissed as completely crazy when we float it twice today. Granted, the first time, over brunch, is to a 15-year-old Belgian friend who traveled here solo to spend 3 weeks as an informal exchange student. And the second time is with Junko, Dave, and Toshio, who are preparing to summer in Germany and then take a sabbatical in Thailand. It's a pretty receptive audience for the simple idea of a few days in Paris as a family, with some pumps thrown in.

We may yet realize this idea makes no sense, that our expanded sense of what feels manageable has transcended the boundaries of reality. But it's fun to think about strolling the Seine with Max in the meantime.

Thu Apr 19, 2007

You can't judge a book by its cover. Or by its title, which is often all baba has to go on when ordering Japanese books for her grandsons. Toshio was the recipient of "Otousan" (Dad), which sounds like a nice enough children's story, but actually tells the sad tale of a boy after his mother dies.

"Norimono Ippai" (Lots of Vehicles), which Max picks for the first time this morning, turns out to be a safer gift. All modes of transportation are rendered, looking remarkably cute with just the addition of eyes. Max has ridden in most of the vehicles that appear early in the book (jidousha = car, takushi = taxi, kyuukyuusha = ambulance). I wonder if later vehicles will provide the opportunity to talk about things he might ride in for the first time in Paris, but it turns out to be unlikely (shoubousha = fire engine, gomi shuushuusha = garbage truck, kamotsusen = cargo ship).

No one has balked at the idea of us going to Paris. We realize that the head-shakers might be keeping their thoughts to themselves. But so far, most responses have been of the ooh-la-la variety -- including among Max's doctors, as well as from Ellie's mom, who knows just how many hours and suitcases and plans are required to handle all the pumps and syringes and bags. We feel encouraged enough to start referring to the shinkansen as the TGV in future readings of Norimono Ippai.

Tue Apr 24, 2007

Planned hospital visits are far less stressful than unplanned ones.

We made a planned trip yesterday to pick up Max's first batch of Omegaven shipped to Denver. Everything is now in place for us to continue his treatment here. Exciting, and for me, relieving. Of course, Randy never worried about the delays, because there was no point to worrying.

Today brings an unplanned trip to Children's, and a different kind of excitement and relief. The day starts in a routine enough way. I am heading out the door for a dentist appointment, leaving Max in good hands -- not just with Randy, but also with PT Betsy, OT Judy, and case manger Laura, who are here for Max's semiannual assessment. But as Randy tries to "DC" Max (i.e., to disconnect him from his pump), blood starts dripping onto the dining room floor. Max's broviac -- the heavy-duty IV responsible for delivering most of his nutrition and now his fish oil -- has broken. His blood is now reversing out of it.

We clamp the broviac above the break and head to the hospital. The surgery to replace a broviac is minor -- this is the surgery Max had just before we left Pittsburgh (when his broviac got dislodged from its insertion point at his skin) and just before we left Denver for Boston (when his broviac got clogged by an antibiotic). But I don't want to face signing another round of consent forms with a surgeon. It's old hat, I know, but I just don't want to hand Max over again. It seems harder as he gets older, and grows more capable of calling for us (well, for Dada) and signaling that he doesn't want to leave our arms.

It turns out that he doesn't have to. The broviac does not clog during our 45-minute drive to the hospital and the 45-minute wait there. (Clogging from blood clots is a risk if you aren't able to DC properly). So the broviac can be repaired rather than replaced. Randy and I entertain and feed Max during this straightforward procedure. We're good to go while the forecasted snow dump is still coming down as rain.

This simple outcome brings us enormous relief, but also pause for thought about possibilities like Paris. It's not clear why the broviac broke -- these things can just happen from wear and tear. Nurse Stephanie, who repaired the broviac, points out that we could certainly manage Paris if we travelled with a nurse. "Bring me!" she suggests.

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):

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.

Sat June 9, 2007

Step two for Paris is Pittsburgh. And Cleveland. We head to both places next week on our first family flights just for fun -- no biopsies, no blood draws, no broviac replacement surgeries. At least none that are planned.

The trip won't include the thing we fear most about Paris: jetlag. We have heard that Max may adjust to that 8 hour time difference faster than us, but I also worry about our alertness for handling his cares. Our practice trip will include home turf advantage with jiji and baba in Brecksville, a suburb of Cleveland where I spent 9 of my formative years (and which we haven't seen in 10 years -- family reunions moved to Colorado with us). But the trip should still provide a reasonable reality check for Paris.

In Pittsburgh, Max will attempt his first wedding. We would have more confidence about his prospects for not protesting, except that the groom is the person Max fears most -- despite his thoughtful visits to see Max in Pittsburgh, Boulder, and Boston. Hopefully Anna will help to soften (or at least divert) Ken's scariness.

Fri June 15, 2007

Max is 3 for 3. We realized yesterday that he pulled this hospital antibiotic craziness not only right before Boston in January and Cleveland now, but also just before flying to Pittsburgh for his transplant consult last August. That first episode was the least memorable, because Max had been in the hospital all along. The current episode seems the least serious. Max's temperature is running mostly normal to occasionally slightly elevated. His cultures continue to test negative, and all of his measures argue against infection. He may just have a regular kid virus, though he shows no outward signs of one, and the docs do not view him as contagious. His antibiotics get discontinued and we get discharged this afternoon. Randy thinks we should just reserve a nice corner room at the hospital for the week before Paris.

Sat June 16, 2007

Notes for Paris so far:

1) Pack the nystatin somewhere memorable, so that it is easy to find upon arrival. The sticky, syrupy, nystatin.

2) Cap it tightly.

That's it. The start of our trip, which involves the pilot intervening on our behalf, makes us expect a much longer list. The seat next to Randy is empty, so the flight attendant readily agrees to retrieve Max's carseat for it from the gate check-in. But a gate agent blocks him, insisting that the "revenue-generating" seat must be kept empty for the flight. The flight attendant notifies the pilot, who overrules the gate agent and retrieves the seat himself. Randy and I join the chorus of sighs of relief issuing forth from surrounding rows. Max rewards everyone by promptly falling asleep, snoozing through take-off and the first hour of the flight, then exploring the endless entertainment afforded by an adjustable tray table (up, down! up, down!), overhead light and fan (on, off! on, 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.

Fri June 22, 2007

When we land in Denver, Randy declares that although our fellow passengers suffered, Max was not the worst baby ever endured on a plane. Our evening flight falls in his fussiest window. He has taken only one brief nap so far, and has to be woken to board the plane minutes after starting his second nap. He refuses to sleep on Randy or me. A separate seat has been offered for him on every other flight (even without pilot intervention), probably thanks in part to Akira -- who as a member of the bajillion-miles club, can actually bestow frequent flier status on others. But today's flight is completely full. Full of passengers listening to Max.

With everything we've been through, Randy and I have often thought about our friend Barb's "bad marathon." She has run many good races, but for this one she experienced severe cramping that forced her to stop several times. She managed to complete the marathon somehow, and came to value the experience for allowing her to worry less, knowing that she could make it through bad stuff when it arose. Seeing Max through each major surgery was a bad marathon. Finding him in his bloody crib was another. This flight is our bad marathon of travel. At 2.5 hours though, I suppose it's a sprint relative to getting to Paris. But we see that we can make it through.

Mon Aug 13, 2007

In theory, we leave for Paris in one month.

In practice: We have Max's (adorable) passport and 4 plane tickets. Many members of his medical team -- most recently, his surgeon -- suggested their services might come in handy on this trip. Nurse Practitioner Kristin will be the one joining us. She cared for Max during his early days at St. Joe's, helped us out after we returned from Boston, and travels the world through Operation Smile. We have broviac repair kits on order, which the three of us will get trained on.

We have an apartment awaiting us, and a local guide to whisk us to the hospital if necessary. We have Max's medical records, and will get key terms translated before we go. We have our talk abstracts submitted (I arranged for Randy to also give a presentation). We have TPN travel experts to consult with on plugging in pumps in Paris. Friends around the city are eager to meet Max. Other Max-fans are flying in from London and New York for the conference.

And, we have no idea what might happen between now and then. Just theories.

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 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.

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.

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 (recommended by another colleague who visited Paris this summer) yields a promising apartment off the Seine, within walking distance of the Louvre, Notre Dame, and the conference. And not far from the hospital, where Olivier Goulet has received a heads-up about Max, in case anything happens. (Dr. Goulet chairs a team that is pioneering explorations of large intestine transplants, something that Max could look into down the road. We're awed by his work, but hope that we won't be meeting him any time soon.) The last-minute nature of our apartment reservation gets us a 15 percent discount.

Good thing one of us is tactical.

Wed Sep 12, 2007

Our last trip to Europe, just before Max entered the picture, began with a photo of my email in-box. It contained 6 messages -- a record low following a vacation-prep cleaning frenzy. Now it is at a reasonable 100. Many of the messages are well-wishes for Max and our 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.

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 Oct 7, 2007

When Max sees other kids running around, I wonder if he assumes they are in their untethered windows. I try not to worry about how he will react when he eventually understands his condition.

He fails the mirror test of self-recognition this afternoon, for the third time. Granted, he isn't supposed to pass this test -- by reaching for the star we put on his forehead -- for at least a few more months. But that hasn't stopped us from periodically putting stickers and dabs of cream on his face and marching him in front of a mirror. It's just too fun. The first time, at 11 months, Max reached for the mirror. The second time, at 14 months, he pointed to his reflection. Today, he pats his head. He fixates the star. He pokes his ear. He does nothing that could be generously interpreted as reaching for the star. Randy decides that the test is flawed.

Max has been enjoying a precious hand-quilted book of photos, one from each of his months, sent by our colleague Karen after she met Max in Paris. But when he first came upon the 8-month photo, he started bawling -- real tears, very agitated. I distracted him for a while, but he kept pointing for the book. When I returned it to him, he flipped through it and started bawling again. That photo was taken by our friend Earl back in Boston, at the peak of Max's bilirubin levels, his face moulting. I don't know if he was upset because he recognized himself and that time. Whatever the reason, he now looks at the photos quite contentedly.

He also spends time looking at the pages that remain to be filled. "Me too," I tell him.

Sat Nov 17, 2007

Paris was one of our best weeks. This was one of our worst.

Monday morning's loss of blood probably would have been enough. That evening, we discovered that Max had yanked his broviac from its insertion point on his skin. Yesterday, we discovered blood in his stool and in his stomach. Today, the tip of his broviac springs a leak of blood.

Max's lifeline was sutured into his skin, but the sutures are now a cm or so away from the skin. This is a terrifying centimeter, but apparently an acceptable one. The real work of stabilizing the broviac is done by a cuff buried under his skin, which his tissues have grown into. We still can't see the cuff, which is good, and there is a bit of distance from the ideal placement of the broviac tip near Max's heart to more peripheral locations where TPN can damage the vein. We are reassured of these facts by our home health care company, the on-call GI doc, and (probably most effectively) by Ellie and Christian's moms, who have been here. Max's broviac is normally protected from any tugging pressure on the insertion site by a fortress of dressings and tape, but he seems to have managed to get hold of a loop of line that is normally tucked away. We can increase our vigilance around the fortress.

To assess the blood in Max's stool and stomach yesterday, we were instructed to insert a syringe of saline into his stomach through his g-tube, and then pull back on the syringe. Our first attempt yielded more blood. Our second attempt 10 minutes later was clear, as were the third and fourth attempts across the afternoon. The blood out the stoma had also stopped by day's end. We don't know what caused this incident, but Max's doctors do not seem concerned. Routine labs get ordered to confirm that he is not losing significant amounts of 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.

Mon Jan 1, 2008

2008 brings wishes for many other kids, too. An Omegaven family in Michigan is thinking about attending a wedding in Hawaii this summer. The mom didn't consider it an option until she read about Max's trip to Paris. We update the travel tips on the short gut wiki. These tips were started by a parent who regularly flies solo to and from Boston with her son and his suitcases of pumps and meds. I still find this prospect terrifying, but their travels are expanding my sense of options, too.