Chiron and I successfully dropped Trajan off and headed to the hospital (I brilliantly dressed him in clothes to sleep in that he could also wear to school since he doesn't have a dress code right now). We made it with plenty of time to wait.
And wait. And wait. But, I really shouldn't complain since they did schedule all three procedures for the same day. On the other hand, I had a baby who likes to eat regularly who wasn't allowed to eat, so maybe I can complain. Between the wait before the brain CT and the wait between it and the stomach procedures, I walked miles with him in the pouch because that produces happier baby.
Here's evidence of that huge head we were checking for. We went back for the brain CT first. It was quick and easy. Strapped him in and some combination of the swaddling, secure straps and just the new setup resulted in him not complaining at all.
I'm definitely not a brain expert, but looking at the picture in the viewing room, there was no obvious area of color change or big pool between brain and skull or anything like that. Between that non-expert viewing and the fact that they didn't stop us right then and no one has called yet, I'm saying there was no "something" there.
Then it was back to the waiting room. By this point he really wanted to eat, but I did successfully walk him to sleep:
And then it was back to the room where they did both the swallow study and his repeat upper GI. Luckily, I was able to keep him asleep through the first half-hour discussion of what they would do and how to set it up, because when he did wake up, he really did want to eat.
They started with a swallow study which he was fine with as it meant eating something. This time they mixed the barium with expressed breast milk instead of just doing the barium drink. He seemed to like it:
Unfortunately, they only let him drink about 15 milliliters and then took the milk away to flip things to shoot the upper GI. He was NOT amused:
I also haven't gotten any official results on these digestive procedures, but did get some basic info from the speech pathologist.
- Still definitely has reflux, oh lots of reflux
- He swallows later than is typical, so this is likely the explanation of some of his coughing/choking. He does do a good job of protecting his airway though, so we should just support him through these episodes
- He is not aspirating (woot)
- He performs better with non-thickened milk, so we are not going to try the trial of nectar thickness expressed breast milk we were going to do this weekend
I'm unclear when or if I will hear anything official from either doctor, but I don't think we got any real newsflashs either positive or negative from these studies. Slow and steady, tortoise, gradual progression from status quo, that's our boy. And he's always been that way and it totally works.
Where do we stand now? We are keeping him on both of medicines, Zegerid and Bethanachol. He has an appointment August 5 to get a head measurement. He has an appointment August 11 with the ENT. The gastroenterologist said that the ENT will likely schedule him for some more visualization/scoping that will likely require sedation. If she does and his head grows percentilewise again, we apparently may schedule a second MRI at the same time as the ENT imaging stuff. And he goes back to the gastroenterologist September 6.
If he increases in frequency or severity of his choking episodes, the gastroenterologist says to call him and he will likely admit him to the hospital for more workup. As this may end in a fundoplication, we vote to avoid that. That said, if either of us starts to feel uncomfortable with the episodes, we will do it.
I did remember to warn daycare about the barium poops, so I haven't received a paniced call on that front!
Yay for no 'something', I'm in agreement, if they've let you leave the hospital and no-one calls fairly quickly, you're in the clear.
ReplyDeleteChiron looks very stoical in his photographs!
Sorry to hear that he is having a rotten time of things with the reflux. Good that he's not aspirating though.