We're still here. But we might be getting closer to understanding Micah's tummy troubles. Hooray!
(side note: Micah does not have an oral aversion, praise God!)
History - Micah started screaming almost immediately after we brought him home on 2/29. Initial thought was constipation. Then it was due to just being a kid with a g-tube. Then it was a dairy allergy. Then it was a dairy and soy allergy. Then it was difficulty digesting complex proteins. Then it was slowing of the digestive system due to a weak heart. It might be all or none of the above. But there appears to be a potentially larger issue causing Micah's feeding difficulties.
Micah had a swallow study done yesterday morning (they add barium, I think, to his formula and put him on an x-ray table to watch how the food goes down when he swallows). The very cool thing is that the swallow study went well. He was almost completely asleep, so he wasn't irritable and he sucked and swallowed almost perfectly well. His speech therapist and I were a bit confused, but it's a good thing that we were able to see that his body is capable of doing the right things. But he still wouldn't eat much during the day, and he just screamed when presented with a bottle for the next feed. That screaming with feeding sent me over the top. Because the feeding intolerance wasn't really present last week, I asked if it could be due to his MIC-Key button being replaced on Monday.
So, he went back to x-ray for a g-tube study. They injected a barium liquid through his g-tube to see if it's placed correctly and not obstructing anything. The g-tube placement looks good. But the radiologist looked a bit longer (I can't remember the acronym, but it's an upper-GI study). He said, "It appears that the liquid is pooling at the upper section of the small bowel." I asked him if that was his duodenum and he looked at me kind of funny and asked how I knew that. I told him that Micah was born with duodenal atresia and it had been repaired when he was 2 days old. At that point he went back to Micah's history to see previous upper GI studies. He was very concerned when he found out that Micah had only had one previous upper GI study: the day before his duodenal atresia surgery (apparently they only do a follow-up GI study if the baby doesn't tolerate his feeds... "tolerate" has different definitions, depending on who you talk to).
Micah went back to x-ray an hour later to see how much had gone into his intestines. It appeared that most of it had made its way into his intestines. We knew there wasn't an obstruction, or he wouldn't be pooping. But it didn't go through as quickly as it should have. It might be that his duodenum is just simply not functioning (contracting to push food through). Or there could be adhesions around the repair sight that make the passage more narrow than required. The surgeon on service today came by this morning and he's going back to review the x-rays. I think he's planning to meet with the gastroenterologist too. I'll try to post again later today with an update once I hear something.
Micah will likely soon be glowing from all of the x-rays he's receiving. It's starting to become concerning. But I do want to find out what's going on before we leave here, which might be Friday. People keep walking in wondering what we're still doing here. He's been cleared by cardiology so we can go home once the GI issues are resolved, whatever that means.
Suspense by Rachel Dylan
5 weeks ago