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A new theory

Raya's GI doctor heard back from Dr. DiLorenzo in Ohio. His theory is that having the GJ tube changed could have caused an intermittent intussusception in her small bowel. I know, what is that?? Here's what the Lucille Packard Children's Hospital at Stanford's website says about it:
" Intussusception occurs when a portion of the intestine folds like a telescope, with one segment slipping inside another segment. This causes an obstruction, preventing the passage of food that is being digested through the intestine.
The walls of the two "telescoped" sections of intestine press on each other, causing irritation and swelling. Eventually, the blood supply to that area is cut off, which can cause damage to the intestine."

Sounds gross, doesn't it? Dr. DiLorenzo said that having the tube changed could have caused intussusception, which could be responsible for the backflow of all of that bile into Raya's stomach. He suggested temporarily swapping out the GJ tube for a G tube and running everything through Raya's stomach. (As soon as the nurse told me that, I instantly started planning in my head how I will vomit-proof certain parts of the house.) The thought of yanking the GJ and replacing with a G had crossed my mind but honestly don't know how that would work without the vomiting coming back. 'Twill be interesting. I'm waiting to hear back from Dr. S about whether or not she wants to try going back to just the G. There's also a part of me that wonders if we would have this problem with a separate G and J as opposed to an all-in-one button. Not that I want to subject her to surgery again or have 2 tube sites to take care of. I just wonder if having a tube through the pylorus all the time is causing more problems than it's worth. Kind of like when we wondered if having an NG tube in her esophagus was causing more problems than it was worth. I think the J tube has become a security blanket for me. Having it there means that I can put formula, fluids & meds into Raya and know that they'll stay in and not get thrown up. I think that has contributed to us finally getting her vomiting under control. Since she's not puking them up, they're staying in her body long enough to do what they're supposed to do.
In other news, we'll be doing a 4 hour fasting blood glucose test tomorrow. It's not anything complicated, just have to turn off the feeds & fluids for 4 hours and then take her in to get blood drawn.

Here's some pictures of Raya's first adventure at the splash pad yesterday. I'm a little paranoid about taking her swimming with the tubies still (not to mention that there's 4 kids and only 1 of me!) but the splash pad was fun.


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