Advice needed! G-tube fitted, and now not drinking!!!

[LemonLovely]

Hi all, my infant son has chronic kidney disease and does drink orally, but not enough, so we recently made the decision to move to g-tube from NG-tube, sooner rather than later.

He was originally fed every 3 hours over 24 hours, oral and then bolus top-up. Following peg insertion over a week ago, and two amazing days which followed of oral intake (finished 3 whole bottles in a row on the second day) we moved to 5 day feeds, and overnight continuous feed spread over 9 hours. Fast forward a week and his oral intake has gone off a cliff, as, we now know, the continuous overnight feed is making him feel full and so he doesn't want to drink. We've reverted to what we were doing before, to try to get things back to what they were, but he not interested in the bottle, screaming if we try to feed him. It's so frustrating as we'd worked so hard to get him to the point where he was drinking whole bottles, and now, by trying the continuous night feed, it's turned everything on its head and we're back to square one.

Has anyone had this happen to them, and were you able to turn it around again? If so, any tips for how we might do this? Obviously if he has to be exclusively tube-fed then that's fine, but as we know he's able to eat, and usually enjoys it to a level, it's a bit heartbreaking to suddenly, overnight, finding ourselves tube-only feeding him.

[NoMarymary]

Could he have reflux? I've read that gastrostomy insertion fixes the stomach to the abdominal wall and can worsen reflux as the stomach is more limited in its movements. (Think washing machine)

Look at doing all the reflux remedies, upright feeding, gaviscon, thickened feeds etc to see if this helps.

I have heard that overnight feeds seem to suppress the appetite.

[NinePeedles]

What did your son's dietician recommend?
If he has just had his peg a week or two, that seems a very short while to increase his intake so much.
When my little one got his, it was a case of slowly, slowly increase, over weeks/months.
Do you give him water boluses? Water is absorbed much quicker than feed. It is hard to tell from your post wether it is just fluid he needs or feed.
Your dietician should be able to guide you. So much depends on his weight, the volume and rate of his overnight feed and the amount of oral feed.
With our little one the volume of the overnight night feed was very very slowly decreased over many months, which enabled him to take more orally during the day until he no longer needed the pump feed overnight.

[LemonLovely]

Thanks for the replies, everyone. In response to the various questions, my son is an infant so he's on milk-only. He had reflux really badly, which has been medicated heavily for about 2 months (and the pain element of it is now gone), and amazingly within 2 days of the g-tube insertion the vomitting stopped and we've had no vomits in over a week. Touch wood that's a good sign!!!!

Since the overnight experiment went so badly, the dietician recommended us playing with his regime to see if we can find what suits him, and get him drinking what he was before the change. Once he's hitting his volumes every day she's happy. (PS His intake hadn't increased since the peg was fitted - same volume, just given in a different way.)

That's the bit I was hoping for advice about: for people who have had this happen (a baby who does drink, who overnight stops because of a change in regime) what type of new regime did you implement to bring things back on track (as it was an overnight change that knocked him, rather than us trying to build up his oral intake from a low level). However, in last couple of days we've made changes that seem to be working as yesterday he ended up drinking really well, and almost finished a whole bottle at the end of the day…phew! Now that he's not vomitting, we've increased his bottle volume with more of a gap in between (4 hours rather than 3) to build hunger, and subsequently dropped a daily bottle, and do the rest of the volume he's missing by pump between 20.30-00.30, allowing him 5.5 hours to build back up his hunger.

[starfishmummy]

Ds would have nothing to do with his bottle either. His started when he had an ng tube and continued for many years. Sorry I know that isn't what you want to hear. I think you just need to offer little and often and not when he is full from a tube feed. His paediatrician suggested offering the drink from something like an egg cup - apparently she had success when this was done on "her" ward with prem babies who had no suck reflex. It worked for a while with ds (until he became poorly) but was very messy!!

But I think you are making too many changes too quickly. I know it's tempting to do so but as others have said slow small steps is the way forward.

[NoMarymary]

DD didn't have her peg until 3 so I'm not much use wrt babies!