I mentioned casually in one post that Teddy stopped eating orally, but realized I’ve never really talked about it in detail here.
Teddy had been eating less and less by mouth, and taking his feeds increasingly via tube, pretty much since we put that tube in. It was very gradual. Eventually, early fall, he was down to taking a few hundred mL via bottle daily, and the rest via tube.
He’s also slowly decreased how much he can tolerate via his tube at one time. He’s always been kind of persnickity. I was having to do his bolus feeds via the pump, or via syringe in 10-20 mL increments since summer.
During our most recent hospitalization in November, he was taking less and less via mouth. One day, I realized he hadn’t taken anything via mouth for about 2 days, but was instead gagging on the nipple. He’s always eaten really well orally after surgery – being starving and having a sore throat probably helps that a little. Well, after his last surgery, he refused to eat anything, even in recovery.
So… alright. We switched to entirely continuous pump feeds. 60 mL an hour for 10 hours for his 1200 mL per day. And you know what? He virtually stopped vomiting. He still had one or two pukes a day (his morning puke upon awakening, and then usually after a nap or whenever it would be most inconvenient).
I feel like it’s a huge step backwards. I know that giving up on oral eating now will make our job harder later. But I’ve let it go. He’s not puking. That is the world to me right now. My number 1 goal right now: Reach Transplant Weight. Not puking makes that easier.
I do continue to offer food. He plays with food at mealtime and sometimes he will put it in or up to his mouth. Sometimes he gags, sometimes he doesn’t. Sometimes he holds food in front of his mouth and makes chewing sounds, which is hilarious. He started “drinking” from a sippy cup this week – if I take the stopper out and hold it up to his mouth and pour some in, he will sometimes swallow it. (or he’ll spit it out, or he’ll gag, or he’ll swallow and then hack it back up like a furball.) I sometimes put pureed food in his mouth. He usually scrapes it off his tongue with his fingers and hands it back to me like “um, did you lose this?” Lovely. I’ve learned NOT to put solid food in his mouth (anything not pureed), because he always gags and vomits, but if he does it, he usually doesn’t vomit.
We’re going to start OT next week, but the therapist is on board with my goals: I don’t want him to forget he has a mouth, and I don’t want him to forget how to use it. I’d LOVE to work on not gagging on food. But oral eating is NOT my priority. I simply don’t care at this point if he eats orally or not. It’s totally OK if he does, but I’m not willing to tolerate vomiting to get there.