Bosson Dotchu, Addie.
Addie's at a point in her life where she talks...a lot. She has new words daily. She's mimicking us more and more and we're finding that we need to be careful. Very careful about what we say in front of her. One misplaced expletive during a moment of attentiveness and we've got ourselves a foul-mouthed parrot. Granted, Steph & I aren't sailors. But we do stub our toes. The Dolphins do play like they did against the Jets. And she does have daily poop explosions. So there's bound to be some colorful words uttered at various times in the Durfee household. Expletives aside, it's pretty mind-blowing when we find out that Addie knows something that we've never actively taught her. Something that she's picked up on her own, through our normal, daily conversation with her. This week's new phrase is 'dotchu'. "Mama, dotchu." "Dada, dotchu." She says this when she comes close to us, as she stretches her arms upwards. Standing on her tip-toes for a brief second before placing her heels back onto the floor. Many times, she repeats these motions and these words until we acknowledge her. "Mama, dotchu. Mama, dotchu." Many times, when we pick her up, we say, "Mama got you" or "Dada got you" as we lift her into our arms. She's learned this. The tiny, ever-growing, ever-learning grey matter computer inside her head registering the repetitiveness of what we say, making the connection to being picked up and held. Feeling safe. Knowing that Mama or Dada does indeed, have her.
This week was our trip to Boston Children's Hospital. Something that had been in the works for months, ever since our current GI recommended that we see a true motility specialist. Originally recommending that we trek to Cincinnati, but nevertheless making it clear that we needed someone with more expertise in all of the areas where Addie struggles. Steph, being the research nerd she is, didn't settle on Cincinnati. Because who really wants to go to Cincinnati anyway? Through her connections with other GI moms via social media and her ceaseless internet research, she'd decided that Boston Children's was a better place for us. That their Center for Advanced Intestinal Rehabilitation (CAIR) was the right fit. We've been in contact with them throughout the summer, working through logistics, coordinating the exchange of medical records, answering questionnaires, talking to the seemingly never-ending team of staff they have. And Wednesday, we made the first of what will likely be many trips up north.
Why Boston Children's?
I'm sure that many parents with kids in situations similar to Addie can attest that they're the best. They're ranked #1 overall when it comes to children's hospitals and in the top 3 in every major specialty area for kids, including Pediatric GI. Right up our alley. I think caveat is the word that I need to preface my next few paragraphs with, so I'll use that and any or all of its 314 synonyms. We're at Hopkins now. A hospital that is ranked #5 overall in the same field where Boston is #1. They're top 10 in ever major specialty area. That should be good enough, right?
It's funny. In Boston, I lost count of the number of Patriots hats, sweatshirts, windbreakers, and Polos I saw as we walked the city streets or as we hitched a ride on the T. Even in one of the waiting rooms at Children's, they had photocopied coloring pages with what I assumed was a likeness of a long-haired Tom Brady, branded across the bottom with the slogan 'Go Pats!'. Of course, I took the opportunity to cross it out in bright orange crayon, changing Pats to Phins, but I digress. The reason this is all relevant is because I realized something. The Patriots have finished #1 in their division in all but two seasons since 2001. During that time, there's always been a 2nd place, a 3rd place, and a 4th place. Over the years, the Dolphins, Bills, and Jets have effectively spent those 15 seasons fighting for second place. I'm a die-hard Dolphins fan, but also a realist. While Miami has taken that #2 spot on a few of those occasions, I realize that the divide between the Patriots and the rest of the division is massive. While the sampling size is different between the AFC East and the ranking of America's children's hospitals, it illustrates just how wide that divide between #1 and the rest of the pack can be.
The reason for the Patriots' superiority is immediately evident. The reason for Boston Children's is as well. I won't spend any time bashing Hopkins. They're an incredible hospital, that does great things for their patients. We're lucky that we've been close enough to have Addie's care handled by their team. They've gotten us through countless surgeries, put her on a path of growth, and have been there many times when we've needed them.
But just as the Dolphins aren't the Patriots, Hopkins is not Boston.
Boston is Our New Home
We went to Boston with one of two possible outcomes. A second opinion, or a transfer of care. With everything that has transpired since the beginning of the summer, we were leaning heavily towards a transfer of care, but we needed to see what Boston had to say. For those of you who are just joining us, in the beginning of the summer Hopkins began to wean her TPN and Addie has not grown much since. We have voiced our concerns several times to her current team, but made very little progress. This summer Addie's growth has slowed, and she started having issues with hypoglycemia and dehydration again. But we needed to feel Boston out for ourselves. What would their plan be? What made them so different? In phone conversations over the last few months, we've seen glimpses of it, but this would be the first time we could sink our teeth into it. That we'd be face-to-face with their staff, telling Addie's story to them, and seeing what they had to say.
I'd say it didn't take long for them to convince us, because it didn't - when they started talking that is. They did spend the better part of the first 2 hours of our visit just listening. Listening and asking clarifying questions. Wondering whether we'd tried x or y yet. Asking us if we knew why we were on our current trajectory. During that initial 2 hours, we met with 7 or 8 people from the CAIR program. Two NPs, a GI assigned to the PN team, an RN who handled logistics (i.e. DME orders, etc.), a GI assigned to the GI team, a nutritionist, and finally, the head of their program - a surgeon. While they did ask us to recount Addie's medical history in almost excruciating detail, it was clear that they'd done their homework. Clear that they'd taken the time to comb through her 150+ pages of medical records. But they wanted our perspective. They made it clear that we were an important part of Addie's team. At the end of that 2 hours, they took their pages of notes back to a conference room where they conferred (cause I guess that's what you do in a conference room) with the team in its entirety. It took them exactly 8 Addie laps around the unit to come back with their thoughts.
Their conclusions? One was decisive, one was admittedly indeterminate.
The decisive conclusion was that Addie was malnourished. That her current PN regimen was deficient. That we needed to immediately add more nutrients back in. They said they like short, fat babies. Not long, thin babies. Addie is underweight, under height (is that a term?). They were left scratching their heads at her current formula, which amounts to little more than IV fluid, fortified with a bit of protein. She needed more fat, more sugar, more micro-nutrients. They hypothesized that many of her as-yet-undiagnosed issues with glucose regulation could simply be the result of insufficient nutrition. Steph lost it. I could see the relief in her tear-filled eyes. Her voice broke as she thanked them for validating her vociferous motherly instincts. As she cried, I cried. Part pain, part relief, part joy, part anger. These were strange tears. Tears that didn't settle on one singular emotion, but that took us across the spectrum of all the parent feels. For months, we've fought against what we thought wasn't right. The fading of her PN before she was ready. The premature reduction in the nutrition that has been absolutely life-changing for her. The thing that has fed that little expletive magnet in her head. The thing that has helped her claw her way from the void that sits below the WHO growth charts to the point where she's just starting to find those bottom lines, grasping with her fingers for a hand-hold that she can use to pull herself up. For some time now, Baron von Munchausen has been sitting squarely on one of Steph's shoulders, yelling loudly into her ear. On the other shoulder, a copy of her pure, mother-self. In direct conflict with each other, she sometimes felt crazy. That she wanted her child to be sick. That she couldn't be happy for the progress she's made. Other times, she heard the words coming from her other shoulder, telling her that she was right. That she knew better than anyone with a medical degree what Addie truly needed. I shut this kind of thing down inside my brain relatively quickly. I'm more of a go with and deal with it person. My inner monologue is filled with little more than "What's for dinner?" and "Should I start Cooper or Watkins in Fantasy this week?" She's plagued by the demons of thought during times like these and those demons have taken a toll on her. So she broke down. She was finally validated. Her instincts were right. Addie is still sick. She still needs the care that only a place like Boston Children's can provide.
The lesser of the two conclusions was that we needed to start from square one. That we needed to go back to the start in figuring out what's wrong with her gut. That we still have no idea why she struggles the way she does or what the solution is. We needed more scans. More tests. Repeats of what we've already gotten. Somewhere in this lack of any real answer to the long-standing question for us though, was the relief that there wasn't an ego. They didn't come back into the room telling us what was wrong with her because they'd simply read her medical records. Or that we'd told them something that convinced them that they knew how to fix Addie. They were admittedly scratching their heads. Addie has more physical miles of gut than many of their patients combined, but functions like she doesn't. She has functional short gut. Her gut is there, but it doesn't function as it should and works more like a kid with less anatomy.
And so, we're here. We're back to square one, but with a bit more confidence than we had a few days ago. We're back to figuring out what's wrong, but while we do that - Addie won't suffer for it. She'll continue to get what she needs to grow. To continue to parrot back our words until she's finally as articulate as her father and as thoughtful as her mother. We don't know how many more trips we'll be making up north. We don't know what the future holds exactly, but we know we're in the right place.
Sometimes, Addie will immediately, on-command, repeat back what we say to her. When we got to Boston, we told her we were in Boston. She immediately said it back, "Bosson". She woke up one morning and as we pulled back the curtain on the view of the city from our room, she said 'Hi, Bosson!"
And so, we're here. We're back to square one. But we can tell Addie that "Bosson dotchu." Boston does indeed, have her.