a side of radiation
and a wake-up call
Yesterday, Ike-a-saurus had a nice breakfast of barium for his swallow study. He had to fast for four hours before, so when I wrassled his slobbery fingers out of his mouth and popped in a bottle of green apple (wtf?) flavored barium, he was like, "Best breakfast EVEH."
You know how when you go in to the doctor, or you go in for some kind of medical test, and you tell them all about your ailment, going on and on, and then the doctor finds nothing wrong with you? The tests come back normal, or can't reproduce the problem? Well that did not happen with the swallow study, no sirree.
Good ol' Ike-a-saurus put on the full show.
He guzzled, aspirated a little, got tired fast, sucked wonky and then performed an admirable imitation of Mount Vesuvius. Out came the barium from his mouth, his nose, possibly even his ears. The look on the radiologist's face was priceless as he saw the mess all over the seat and the machine.
And I would like to point out, when a baby does that – spews forth like the Bellagio fountains – everyone in the room – doctor, speech therapist, radiologist, mom, dad – everyone goes, "WHOA!" and stands there, frozen momentarily.
We learned a lot from the swallow study. Obviously, his reflux is not under control. And we weren't even there to test for reflux. He is indeed aspirating when he eats, but only trace amounts. This is cumulative, though, and can settle in his lungs causing increased secretions and possibly pneumonia one day. He aspirated when he drank, but is actually at more of a risk from aspirating with the reflux, because it's so forceful.
So now we have a vat of slime to feed him (thanks, Christina!). We mix it with his bottle to thicken the milk to a "nectar" consistency. This is supposed to help prevent him from aspirating, with the added benefit of maybe helping with the reflux. We have instructions on how to feed him (sitting up, in quick burst intervals so he gets less tired), what to do when he's done (keep him upright for 45 minutes), etc.
We are pretty much forbidden from breastfeeding now, because my milk is obviously not thickened and it's easier to aspirate thin liquids. It could be dangerous for him. Really dangerous. However, if I pump first, keep an eye out for letdown, and keep him upright-ish, he can nurse for comfort. As soon as I feel like he's getting much milk, though, I'm supposed to pop him off. I really want to keep doing this, even if it seems crazy. The trach is the only reason he's aspirating, we think, so when the trach is out he can nurse again for real. I don't want him to forget how.
(I would like to note here that when he was exclusively breastfeeding, he never did the Vesuvius thing. He did it with bottles, but not with me. He was probably silently refluxing, though, so I should let that rest. Well, not probably, we know he was. The ENT saw evidence of it before the trach, before any of this.)
So. So. So. The study was a spectacular success, in that we saw everything we needed to. Now maybe we can help him eat more successfully. However, because of the impressive reflux, we have to take him for a GI study. If that study shows any physical problems, or anything weird, or shows that the reflux is just too severe, we'll have to do the G-tube.
He did so great yesterday, still smiling even though he was hungry, only vaguely grouchy when he had regurgitated barium smeared from one end of him to the other…. He was just hanging out, all, "What's up you guys? You would barf chalk, too, don't even front."
Yesterday was not easy, though. It was actually quite frantic, and the household was filled with gruffness and yelling and hurt feelings and miscommunication. We were tired and stressed out and not happy with science experiment feedings. Not a great day. But through it all, Ike was happy. And today, with a little bit of sleep and some Simply Thick slime, we are all in a better place (side note – doesn't Simply Thick sound like an Alan Thicke album of the early 80s?).
I wish I could say the calmer feeling is permanent, but I'll certainly take what I can get.