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!
7 comments:
I once heard on the national news of a teenage girl, who was cured of cyclic vomiting syndrome, by doctors implanting some type of pacemaker on her stomach. Though it is experimental and no further info on it.
Gastric pacers are pretty common. Don't think Angela would be a candidate for that. Pretty crazy what they can do these days with a bit of technology.
So many kids/adults are bionic. :)
She is so adorable.....love her earings! I'm sorry she is having this problem....will pray that you all are able to "jump over this hurdle!"
Hope for many good things for your beautiful family, but feel I must share my fundo story.
My sister recently had the procedure and was given a massive dose of antibiotics befor(standard procedure for any "gut" surgery) they nearly killed her because all the " bad" flora came back, but none of the "good". Five months later she has been prescribed an anti-diarrheal for life. Her intestine was so damaged by the antibax that it will never come back, and now she has to hope that this medicine will not kill her bowel. I know I am preaching to the (far more informed) choir- but please discuss ANY possible outcomes before you decide to do this- it was presented to my sister as a very simple outpatient procedure.
Yes. That is a extreme story :). Sorry for those complications. I am that informed person so I understand all risks but in reality we take huge risks each morning just walking out the door. For every surgery I mention I'm sure at least one of my blog readers will have a horror story. While, I appreciate the information, our view on life is that sontimes you need to take risk to get the quality of life you seek. Its just our personal way of life.
We'll see. We would never jump into without serious thought and consideration. But rest assured that we are way informed, probably more than we ever wanted to be :)
If Angela's troubles stem from a motility problem, then maybe it would be better to treat her for that instead of doing a fundoplication surgery. Making it difficult-to-impossible for her to physically throw up won't stop her from wanting to, which would result in a miserable little girl.
Erythromycin is a med that increases gut motility. So does Reglan, but it has a lot of potential side effects. My very-medically-fragile son has taken Erythromycin for several years to treat slow gastric emptying and impaired GI motility. Our goal was to help his stomach empty so that he wouldn't throw up so much. Adding Erythro to his meds helped tremendously.
I'm sure you'll make a good decision for Angela...I just wanted to share my experience with slow motility in case you weren't aware of using medication to help the stomach empty & to keep food moving along the GI tract.
Yes. We have tried all possible meds with no luck.
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