Angela's belly has been such a mystery to us lately. When she was first placed with us last year she was having tons of reflux and vomiting, but after taking her to the GI specialist we figured out that she was being fed way to much and too fast through her g-tube. Once we cut back her tube feeds she was doing better, still the occasional throw up but it was mainly just a normal reflux issue. She was placed on various meds to help, which from the results of her biopsy, are working great as there was no sign of damage to her esophagus.
Anyway, after a few months with us Angela learned to eat by mouth. She did amazing -- progressing faster than anyone ever thought she would. But with progression of oral feeding came lots of vomit. Lots and lots of vomit. It got so bad at one point that she no longer wanted to eat by mouth and every meal was a struggle. So we cut back her oral feeding and gave her a break. Even on the g-tube feeds and minimal oral feeding she still was throwing up, just not as bad. We finally figured out a good rate and amount to oral feed where we could eliminate the vomit, but sadly this meant she started to lose weight and was not growing.
So we decided to try to GJ conversion and start feeding down into the jejunum and leave the belly empty for oral feeding. Really this isn't solving the main issue of vomiting, because it's a motility issue of her belly. You put food in and since it doesn't go down it just comes back up. She seems to be tolerating the J feeding and at this point we want to just try to get her to pack on some pounds.
This is a tricky situation because truthfully we could just give her continuous J-feeds, she would grow and she would live happily ever after without vomit. But Angela can eat by mouth and enjoys doing so and if she has a chance to have this kind of quality of life then we are going to give her this chance. If she didn't have the motility issue she would probably be able to eliminate all tube feeding. So we need to figure out what the next steps will be. We've been throwing around the idea of the fundo with the docs and other parents. I've learned one thing -- people either love the fundo or hate it. The tricky part is you don't know if it will work for your child unless you try it. Bummer.
With all this said. Angela is happy. As far as the world of medically complex kids go she is so easy! One thing we have learned with Gavin is that most of the things we think are huge problems really are not -- they are just simply part of the story and hurdles to jump over. We continue to celebrate all her progress and hope that along with her new gained strength will come better motility for her little belly!