So at Thursday’s clinic visit, our nephrologist suggested trying something new with Teddy. She wants to get rid of that Gtube. He needs to eat better orally. So she suggested trying to give him all of his calories and fluid overnight and then during the day, he’ll be hungry, and in theory, he’ll eat.
I get the theory. I do. Just… I’ve decided not to follow that plan for the time being.
1) He’s really only swallowed a tiny amount of food, ever, and I’m not honestly sure that any of that has been on purpose.
2) It’s actually the complete opposite of what I was thinking of doing with his food. I’d like to get him able to tolerate bigger boluses during the day, so I can feed him less frequently and also so I can cut out his overnight feeds (pending final results from GI about whether he does or doesn’t have the fatty acid issue. (because if he does, he would not be able to go more than 4 hours without calories.) It’s not physiologically normal to be fed all night at this age. I believe every parent I’ve talked to has said that their kids slept so much better without the overnight feeds – which makes sense. Your body’s not supposed to have to digest food overnight. (at this age.) (and certainly not ALL night.) I’d like to move him to a more normal life experience, and that does not include getting 1.2 liters of fluid and 1 liter of food during your sleeping hours.
3. I’m ready to have a break from Project Teddy. I feel like he’s just been one big project. It was Project Get Teddy As Far As We Can Without Dialysis. Then Project Get Teddy Stable On Dialysis. Then Project Get Teddy A Kidney simultaneously with Project Get Teddy To Move Around. Then Project What The Hell Is Wrong With His Liver. Then Project Teddy’s Transplant. I’m ready for there to be NO PROJECT. Just Life. Let’s just have Life for a bit, shall we? I’m ready for less upheaval, more routine.
4. It just plain doesn’t feel right to me at this time.
5. I don’t even know if it would be physically possible. Assuming he stayed asleep for 10 hours, I’d have to run the pump at at least 200 mL/hour. He’s never kept down calories when the pump’s going that fast. Water, yes. Calories, no. He was throwing up all night the one night I accidentally left the pump at 150 with his breastmilk. He also needs to have the pump shut off at least an hour before he wakes up, or it’s Puke City when he does wake up. Took me a long time to figure that one out.
6. I’m not willing, at this time, to deal with a hungry, cranky toddler with blood sugar issues all day, every day. We’re barely surviving our days as it is, I think I’d go completely crazy (and not the good kind, lol) if my day also had to include dealing with a mad, hungry toddler.
So… this could make for an interesting conversation. It’ll be the first time I’ve really just said No, I think I’m not going to do that with this doctor. (Though we first met when I was arguing strongly against the vaccine schedule they wanted us to follow, so there is some precedent there.)