I have to say I'm having a low night tonight. This g-tube thing is really tough. I'm trying to avoid overnight feeds because Jonah is a very active sleeper, and I worry about the tubing pulling on his g-tube site and skin, him becoming entangled in it, the tube popping out and getting milk all over his bandages, and him waking up and pulling on it and hurting himself. He's just REALLY an active sleeper. (Needless to say, I won't sleep peacefully wondering if something has gone wrong.)
That leaves me only a couple options:
- Let him eat what he will by mouth and pour the rest in a syringe and let gravity move it into the tube OR
- Attempt to pump his full feeding over an hour (because that's the longest I can keep him entertained in his high chair).
Problems we're facing right now:
- He's eating way less voluntarily than he was before the surgery. Before surgery, he would eat usually six to seven ounces without a fight, and would take the rest once he was mostly asleep. Now he'll only eat three or four and refuses the rest, even in his sleep. That means we're having to bolus six to seven ounces, instead of just a couple.
- He won't hold still or be content long enough to bolus feed that much. Any cry or even laugh, yell, or blowing a raspberry pushes air out of his stomach and pushes the milk back into the syringe instead of it going into his tummy. He has to be completely relaxed for it to go in. It takes forever... or at least it seems like forever when you are trying to wrestle a 14 month old and keep him happy in your lap.
- By his third bottle (I usually only give him three bigger ones so he'll be hungry for solids in between... mostly unsuccessfully), he's puking most of it up. Before surgery, we were down to one gusher a week. We're now up to one or two a day again. Whether I've JUST bottle fed that day, bolus fed by gravity, or used the pump, by that nighttime bottle, he throws it up. And unlike his normal gushing from before, he refuses to take anymore by mouth after he's done throwing up. So the last few nights, he's gone to bed on a mostly empty tummy.
- He's had, at most, 24 ounces since he went in for surgery. Before he was taking 27 to 28 ounces a day.
- He's stopped eating his Cream of Chicken Soup, which he was eating well before surgery. That was giving him anywhere from 120 to 240 calories a day. Now those are gone.
- He's not getting anywhere near 1,000 calories... or even 800.
So to sum up - he eats way too little now if I don't use the tube. It's become a daily necessity instead of just a back-up in hard times. When I bolus feed, I can't get him to hold still and be patient long enough to get in six ounces. I tried pump feeding him 7 1/2 ounces tonight over an hour, hoping that would be a slower rate than the gravity feed and that I could put him in his highchair and be hands-free for entertaining. He seemed to do okay with it, but got overly tired and upset getting ready for bed, and puked everywhere once we got him up to his room.
This g-tube thing was supposed to be our failsafe way to get him the nourishment he needs. It was supposed to make life less stressful and help him gain weight. It was supposed to HELP him.
So far, he's puking lots more, eating less by mouth, has lost weight (I'm pretty sure), and is not tolerating a lot of what goes through the tube. I don't know what I thought it would be, but I'm more stressed out now about him not getting nourishment than ever.
PLEASE TELL ME IT GETS BETTER.
