Started the dreaded tube wean yesterday. We started by withholding the formula he normally would get through his g-tube and instead just giving him water. We normally let him drink his formula by bottle and then whatever he doesn't take orally he gets the rest through the tube. But yesterday, instead of getting the formula in the tube, he just got water. And he was pissed. (See the attached video).
But the odd thing was, he didn't devour his next bottle. Or the next one. Or the one after that.
Much to our surprise, he didn't drink anything at all, at 1:30p, 4:45p, or 8:00p. We think it may be because he started taking an acid blocker on Friday because he was vomiting massive amounts, like 10 times a day. Good news is that he hasn't vomited since. Bad news is that it seems to have suppressed his appetite. Not the optimum outcome when his therapy is based on having him "develop a relationship with hunger." I didn't make that up, by the way, that's what we're aiming for.
Today's therapy will be more intensive and hands on with two visits from the feeding expert. We did get him to lick some Doritos this morning, as well as a sour apple slice. And just now he licked some spicy beef jerky. He turned down a rice crispy treat though. Man I am getting hungry!
Keep your fingers crossed we make some progress today.
My heart is officially broken watching this. :-( Can't imagine how tough it is for you guys. All fingers crossed here in Madison! Give him a hug & kiss from us (I'm sure that will make him feel better) & tell him we really miss him!
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