Elizabeth has had a lot of problems the last few months with stomach aches and gagging and retching. She is constantly telling me her stomach is full and hurts. We have actually gone from down from the 10 oz per meal she getting to only 8 oz per meal. That is a total volume, 4 oz of food and 4 oz of milk. Which in all honesty is not a lot, especially when you consider that a 6 mo old baby can drink an 8 oz bottle and also eat about 4 oz of food.
With that being said it was decided between her g.i. dr and her feeding dr that the surgeon at U of M that had previously done all her surgeries on her tummy take a look at her. When she was 7 months old it was found that her tummy was only emptying at 5%. In other words, after an hour, only 5 % of the food she had ate had actually left her stomach. So at that time her surgeon decided to do a pyloraplasty. In terms u can understand, she had scar tissue blocking the tube that empties the stomach into the intestine or pyloral area, so he removed it and widened the area to promote better emptying. He also did a fundo-plication nissen, which is a procedure that stops reflux, food can go down the esphogus, but not back up it, so she can't even throw up. He also placed the feeding tube in her tummy so we could get food into her.
After examaning her he decided to order another emptying study to see how she is emptying now and also an upper g.i with small bowel follow through. The first test was done on August 3rd and the second on August 10th. I was told the results of both right away. They said the even with the previous surgeries and being on 2 meds to help facilitate emptying, she was only emptying at 25%, normal is 40%, so she still has very delayed gastric emptying. The upper g.i. said everything looked normal and all previous surgeries were still in tact.
We met with the surgeon on August 20th. The following is what I wrote on Facebook:
Ok, so I'm very frustrated with the appointment today!!! I basically went to be told that yes, Elizabeth's stomach isn't emptying properly yet, but the upper G.I. didn't show any abnormalities. They surgeries they did 5 years ago, still look great and intact and there doesn't seem to be any scarring from them causing the problems. Therefor he doesn't see anything that he needs to do surgically to fix the emptying issue. All he sd was that we should once again consider putting her back on Reglan again. I have very serious doubts about that drug. One she was already on it fro like 3 yrs w/o any significant results as far as I am concerned. Two, they have now stated that long term use of Reglan can cause severe irreversible neurological damages. So I am very hesitant to go that route. He also said maybe we should decrease her feeding by mouth during the day and increase her night time feeding via her mic-key button, which to me seems like a HUGE step backwards!! We just got her eating by mouth a year ago.
Anyways, we are seeing her feeding doctors on Tuesday. There ia another med that isn't fda approved in the u.s. but avaible through Canada that is exactgly like Reglan, but doesn't have the neurological side effects. I guess that is an option, although a possible expensive option for us. I plan on discussing this with her feeding doctors as well as her gastro doctors.
So again, we are in a wait and see phase. Thank you to everyone that is praying for and supporting us. It is very much appreciated!!!
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