For a little over a week now, Collin has been retching like crazy. And it's starting to make me a little crazy. Remember, retching is like trying to throw up, only he can't because of his Nissen wrap. It's sort of like a massive dry heave with a violent gagging sound that sometimes makes his lips turn blue because he's pushing so hard and can't catch his breath. So, yeah, it's awful. A whole day of just me and Collin and his retching is enough to make me a little on the tense side when Kyle gets home from work. Tense in a kind of jumpy, angry, post traumatic stress way. (I can make that joke because I've lived through the real thing.)
He only does it at meals, but it doesn't seem to have anything to do with volume in his tummy, because no matter how slow the flow, he almost always does it. He hasn't had any new food (and neither have I) or any new meds. Nothing is different. We've tinkered in every way we can think of and even put him back on Zantac again a couple of days ago, but nothing is working. It's a crappy, crappy feeling to not be able to even figure out what is going on, much less help him with it.
I keep hoping that I will hear back from Cincinnati Children's Hospital so we'll know whether we're going to see their gastro/feeding team soon or not. I'm going to give them until 10:00 tomorrow morning and then start making 'follow-up' calls, which involves a combination of chatting, pleading, and calmly annoying every person I can get on the phone. Collin likes to sit on my lap while I do it so he can listen. It cracks him up. He giggles in the background like a middle school kid making a prank call. I love that kid's sense of humor.
In med news, Collin is less than a week away from discontinuing Sabril, almost halfway through his second Clonazepam wean, and still on Keppra, which seems to be the thing keeping these new seizures at bay.