Currently Micah has a g-tube, which is a way of pumping food directly into his stomach when he's not able to eat it himself. Tomorrow morning at 8:00am, a radiology PA will be inserting a gastrojejunostomy (GJ) tube through the existing hole in his belly. That tube will go through his stomach through the duodenum (first part of the small bowel) into the jejunum. This way, his food will bypass his stomach and duodenum and be fed into his small bowel. Hopefully this will help his belly pain that seems to be caused by a backup in his duodenum.
Micah recovered well from his endoscopy this morning (which lasted longer than the hour I had been prepared for). And it was quite a relief in the PACU to hear him cry afterward (I'll forever be concerned about his right vocal fold now that his left one is paralyzed). The duodenum is quite dilated. Not sure why that's the case and not sure how long it's been like this. But it was clear that there are a couple of things in there that could be causing pain for him.
So... what does this mean for feeding him and letting him eat orally? According to the gastroenterologist, we can still feed him orally. But we'll probably have to drain that from his stomach once it gets there. Hm. Should be interesting. Or annoying. But hopefully he will be more interested in eating if his belly isn't cramping up when he eats.
Ultimately, there will likely be a surgery to repair something in there. The surgeon who did his original duodenal atresia surgery and follows up on Micah in Neenah (he's there once a month) has already heard about today's procedure and will be reviewing the tapes of the endoscopy. I'll talk with him about it at Micah's next appointment in early June. If he does need another surgery, I hope we can get a two-for-one and take care of his undescended left testicle at the same time. Can we get a punchcard for the operating room at Children's Hospital and after four intubations, the fifth one is free?
When Micah's g-tube was first placed back in late February, the prevailing thoughts were that he would only need it until a month or so after his heart surgery when he would be strong enough to eat everything by mouth. This GJ tube is a step in the opposite direction. He will be connected to a feeding pump for 16-18 hours/day. If it makes him a more content baby who is more interested in a bottle, it's worth it. But I won't tell you it doesn't make me incredibly sad.
And mad. I'm really mad. Mad at myself for not pushing harder earlier. Mad at some doctors who made incorrect assumptions about Micah's belly. Mad that Micah went through months of pain. Mad that if this had been caught earlier it might not be as bad as it is now.
It's easier to "be" mad than sad. But ultimately, I'm just very, very sad.
Suspense by Rachel Dylan
5 weeks ago