9 Years Later, I Still Don't Know What's Going On
It wasn’t the greatest way to start the school year. Owen was eating a homemade chocolate croissant (full disclosure: not made by me, but by his dad) for breakfast on the first day of school and it got stuck. (Readers of this blog will know that Owen was born with tracheal esophageal fistula.) It resolved itself fairly easily, but resulted in Owen breaking down crying and telling me that his esophagus had been feeling tight for the last several days when he swallowed. (He had gone though a major growth spurt in the last few weeks.) While I wanted to scream, “What?!” at that moment, I maintained my composure because I knew I had to begin a round of interrogation that he would not want to participate in:
What do you mean it’s been feeling tight when you swallowed?
Just when you eat, or all the time?
Has something gotten stuck and you didn’t tell me?
How long have you been feeling like this?
I almost wasn’t even listening to his responses because my mind was making a list of people to call and e-mails that I needed to send. Call the surgeon. Wait for call back. Ask for a swallow study. Schedule swallow study. Don’t forget to take Owen’s medical binder with all of his info (dates of last surgery, x-rays, swallow study, etc). Let his teachers know. (I actually, ridiculously, thought that this would be the first year that I didn’t need to let his teachers know about the possibility of food getting stuck during snack or lunch. In his history of going to school, including preschool, he has been so good at self-managing his eating that nothing has ever gotten stuck. So, I thought, at 4th grade, there was no need to slightly panic his teacher with this info. Silly me. After 9 years what do I know?)
It would be fine I told myself. We’ve had a good run –it’s been about 7 years since his last dilation. The longer it’s been since the last one, the more it has been on my internal radar that this day was coming. I knew the drill. We’ve done this 5 times before. Get the x-ray and swallow study. Meet with the surgeon. Schedule the surgery. Get it done. All will be fine. Back to normal.
We had the swallow study on a Friday. (Every time we go through this procedure, I’m instantly taken back to his first swallow study when he was a newborn. He was screaming on his back with a tiny lead apron across his lap, I was in a full lead apron that had a nice choker-thing around my neck, I’m guessing to protect my thyroid, charged with the task of pinning Owen down and forcing him to take a barium bottle. By the end of it I was drenched in sweat from the apron, from the stress, and from wrestling a baby. I’ve had to do that 5 more times before he was two –but who’s counting? I’m just happy that he doesn’t remember any of it.)
Anyhow, the swallow study looked BEAUTIFUL. The radiologist was clearly impressed with his TEF repair –he said he could barely see it. There was no stricture! He didn’t need a dilation surgery! But, the radiologist couldn’t understand why I still had a furrowed brow. Why wasn’t I happy?!
“What do you mean, he doesn’t need a dilation?!” I felt like after 9 years, I had no idea what was going on with this kid. Had I been kidding myself to think that I had a grasp on his care and what he needed and when? This is not at all what I had prepared myself for. AND, I still didn’t have a good answer for why it felt so tight for Owen when he swallowed and why that croissant got stuck.
We then had a very vague conversation –I could tell I was making the physician and fellow uncomfortable trying to speculate about what was going on. He tried again with the “It’s great news that he doesn’t need surgery!” But, it fell flat. He said I should still see the surgeon and that she could help us figure out what to do –if we needed to see ENT or GI. He mentioned that it might be a motility issue and that it could be neurological –to which I nearly flipped out at the thought of having to add yet another specialty to Owen’s care.
Needless to say, during the car ride home, I was processing, processing, processing. And, this week we met with the surgeon and his pediatrician. Long story short, over the last few days, Owen has said that it is starting to feel better and closer to “normal” when he eats. I think his esophagus is self-adjusting to his new height. But what do I know?