UPDATE - reflux, tube feeds, weaning, any advice....

[Mouseface]

UPDATE POST OP.

Well, it's gone from bad to worse. The surgery in itself was fine apart from bleeding afterwards which resulted in more emergency surgery and a blood transfusion! PICU for us yet again and a longer than planned stay but he's home with us and that's the important thing.

Anyway, He now point blank refuses to eat, anything. He won't let the spoon near him, or fingers. He puts his hands to his face and cries. Finger food is a no go too...... just not interested. He just throws the food off his highchair and isn't interested sitting anywhere else to eat either. This all started just before we went into hospital, about 2 weeks before, just after my last post.

His CCN and cleft nurse said to keep going, to keep trying. WHY?? Surely that turns it into a battle? We have been reffered back to his SALT but ye to hear from her . The cleft was repaired only at the back and he was tongue tied too. So he still has the hard cleft. He is fed by NG so his milk is still the same, although I'm thinking of asking paed on Friday for more calories. His weight seems to have dropped a little and sleep is a thing of the past. It's like I have a different little boy.

Has anyone else done well with puree then it all stoppped? Does anyone else have the same fight on their hands and what support do you get? I'm at the end of my tether with all the conflicting advice.

BTW his CCN said that babies with heart conditions are bad feeders but his cleft surgeon said that there is no reason he's not eating and that I'm clearly missing something.........that I need support. Now that I've asked for it, it's taking a while to materialise

Hello mouseface, blimey it sounds as though he has had a right time of it. Poor boy and poor you!

I posted on your thread before he had his op about my DS2 who amongst other problems had his palate repaired. He was quite a bit older though at 5 and eating, not normally but eating nevertheless.

He did however go on a complete eating strike for at least two to three weeks after the operation. He would drink, but again he was old enough to drink from a cup, so no bottle to make his mouth sore.

It would make sense (to me anyway) to feed him with his NG until the swelling/ soreness has gone down, although we were told that swallowing helps with the healing process. Has he been checked for infection on his wound over the last couple of days. Despite me sterilising everything in sight DS2 still ended up needing additional meds as he developed an infection.

Does he have high calorie milk at the moment?

I hope things improve soon.

Sorry just re read your post and see he is being fed via NG. Sorry.

Hi

Crumpled. Thanks for the advice, he's at the paed on Friday (think I said in last post)so will get him to have a look as I'll never get him into docs before then! He seems ok, no temp or oozing (is that how you spell ooz?) He's not grumpy or anything but just won't eat. Maybe he's like your DS - on hunger strike as a way of protesting with all the faffing that's gone on in his mouth. He hates being gassed down too for ops so that never, ever helps!!! He goes mad when they cover his face with the mask.

Am going to try him later with some apple puree. Just for the hell of it. He did put his fingers in his mouth this morning for the first time in weeks so maybe he's feeling less sore??? He was dosed up though all the time to keep him as pain free as poss poor little thing.

Oh, and I think he has lost weight, I can feel that he has. Waiting to a get battery for the scales so I can weigh him later but he feels slimmer to me. Also, left him to cry using the Ferber tech last night, 5, 10, 15 mins etc before going back to sooth for 2 mins and it is starting to work! I think he'd gotten into a cycle of crying when I left so did it because he saw it as the norm. Ferber says he'll be sleeping beauty by the end of the week...... just fine by me!!!