Tuesday, October 14, 2008

Feeding Is a Nightmare

My Peanut has been fed through her g-tube since she was 10 months old. Prior to that she drank from bottles, but not well. She never took more than 10 ounces a day. Yes, a DAY. And what she did take was in half ounce increments, and it would take 45 minutes to get that much in her. She had low muscle tone in her mouth, and would dribble all over. It was not fun. Then at 10 months she got parainfluenza, ended up on an ng-tube, waiting to recover so she could have a fundoplication and g-tube placement. She was tiny, about 12 pounds. She got her g-tube when she was over the parainfluenza, and she has never eaten by mouth again.

She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!

Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.

The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.

AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.

So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!


Jessica mommy to Alex/ RTS said...

Well, we need to get together for lunch!
I feel your pain. Alex's night feed is set at 50cc an hour, and sometime there is still throw up.

Although he can tolerate 3 oz bolus feeds over an hour in the day time.

This is the hardest part of this special life. GI related issues stink....

shan said...

Ugh! I am so sorry that it's like that for your sweet girl! I hate, hate, hate them having to vomit. Marie does not any more (though we lived with multiple daily vomiting due to reflux for months). When she had her g tube done in February they did a fundoplication. She already had reflux and they told us that the way they reposition the stomach to place the tube will give kids who never had it before reflux, and it will make existing reflux much worse. The fundo has been a mixed blessing, while healing there was a lot of gagging, and she couldn't swallow much at a time (Marie still does eat by mouth, she just gets so tired doing it she can't get enough to sustain her). She cannot burp or vomit anymore, but we just vent her tube after every meal and it's never really been a problem once it healed and she stopped gagging so much.

I thought I'd offer our experience, I don't know if it would be a help to you guys to ask about fundoplication or not... I don't know if they're meant for long term... since Marie is considered terminal long term was something they never brought up for us.

Thank you for posting that sweet smile! She brought a smile to my face as well!

The VW's said...

Yay for no puke!!!

Your story reminds me so much of Gavin's, in the feeding department! He tolerates a very small amount at a time as well, and even with the small amount going in he wretches, gags and spits up! He also hates to eat by mouth! It's so sad and frustruating at times!

I just can't figure it out and neither can anyone else! Hang in there and know that you aren't alone! I'll be praying for you and your sweet girl! I LOVE that picture of her, BTW!

ANewKindOfPerfect said...

Thank you ladies. Shan, she's had two fundoplications. The first one slipped after only a month, the second one lasted almost a year. She now refluxes and throws up right past the fundo. :(

Tamara said...

Hey there girl... my only suggestion would be to add more fat, like you suggested... Abby has to have more too and she is on DuoCal. Thats all it is, high consentrated fat stuff (powder). we add two scoops a day. I hope you find a solution and fast, bless both of your hearts! Abbs had the Fundolication and was on 50ccs and now we are up to 425 which is such a blessing. I will be praying for this as well!