From Julian's COTA Journal
Julian woke up from his nap yesterday afternoon appearing to be in some distress. He started coughing and gagging, and within a few minutes vomited up his NG (feeding) tube. We yanked it, getting it "out of his head" completely, and he calmed down. We put him in the bath - and he seemed to be fine.
But then we're faced with a different problem: we had long suspected that his current tube placement may not be a good one, and that it was causing at least part of the coughing problem, but now that it's out, how do we maintain constant feed and hydration?
Well, last night we pumped him full of formula before he went to bed, giving him most of what he would otherwise receive via the tube & pump in advance. Then we let him sleep. We all had the best night's sleep we've had in a while. He did wake up a couple of times with what seemed to be painful coughing fits, but they were relatively short, and he fell asleep again once they were over.
We just administered his 9:00 a.m. meds by mouth - and he went back to sleep.
I think we'll try to fee/hydrate him today by mouth and see how it goes. If the tube is really that uncomfortable, it may be worthwhile talking to the docs about options that don't involve it. Older children who receive kidneys don't end up with a tube because the docs know they'll follow parental orders to drink x-amount of fluid per day. If there's some way we can work out a similar system (w/ the docs' blessing of course), it may be worth considering.
If not, we'll put the tube back in and hope for the best. It's just so nice to hear him breathing in his sleep and get the sense that he's not having to fight for it.