The comedy of errors continues. Apparently, anesthesia can cause a slow-down in the GI tract, so yesterday's upper-GI study was pointless. So... if they KNEW that was a possible side-effect of anesthesia, why didn't they do his upper-GI study a few days ago BEFORE doing the endoscopy, etc.? I couldn't go back to the hospital to meet with the GI doc this afternoon. Mark met with him instead. Though tomorrow is going to be a pain because there's a new GI doctor "on service" and we'll sort of start from scratch with him, it seems it will be a good thing to rid ourselves of the GI doc we've had this week. He seems to be a fairly intelligent guy, but maybe he was too distracted with some other more serious cases this week and has made some questionable calls with Micah's diagnostic procedures.
We're insisting on another upper-GI study either tomorrow or Tuesday to see "if" he has a significant slow-down in his intestines. They've started his feeds back up and will increase them very slowly to see what he will "tolerate." I really don't like that word. I've been told that they consider Micah to be "tolerating" his feeds because he doesn't vomit. The truth is, even with his reflux, Micah has only really vomited one day (the day before we brought him to the hospital). When he refluxes, very little actually makes its way to his mouth. I don't think he has the muscle tone required to truly vomit. And besides, when he seems to be getting uncomfortable, I have the ability to "vent" his stomach and take out the excess air and fluid through his G-port. I don't want to have to stop venting him just to prove to the doctors that he's not "tolerating" his feeds. Does screaming and a bloated stomach not count as "not tolerating" his feeds?
I'm hoping to get a nutritionist to consult with us tomorrow. I'd like to know what level of food Micah needs to be getting for sustenance. I want to make sure that they're calculating his food level while taking his low motility into account. It's possible that we're over-feeding him based on some kcal/kilo calculation for a "normal" kid and I'd like to consult with a nutritionist who knows more about kids with Down syndrome and the effects of slow motility.
I realize I've been more than a bit negative lately. I'm not sure what to do about that except pray. Could you please pray that I would have a peaceful heart and speak pleasantly to Micah's caregivers? The nursing staff has been wonderful and I hope I can show them some appreciation in the midst of my frustration.
BTW... Micah is 9 months old today. I'll try to post some photos soon.
1 month ago