Yes, once again, Raya has confirmed that the tissue in her digestive tract is normal. Dr. S called tonight to tell me that the results of the biopsies from the EGD (endsocopy) last week were normal, as we suspected they would be. She asked how Raya was doing and I told her that she seems to be feeling a little better this week than she did last week but that by 7:30 this evening, she had drained 530ml of bile (about 18 oz), and that was even with having the tube clamped for a couple hours earlier today and then 3 hours this evening after I talked to the doctor. Once again, she said she's pretty much stumped at this point as to why Raya is losing all of this fluid. She asked me if the GJ tube they replaced the broken one with was the same size as the old one, and it is except for one part that doesn't have any effect on the J part of the tube. Since that's the same, she doesn't think the actual tube is to blame.
One issue that could become a problem with all of this bile that she's losing is that she could end up with malabsorption problems where her body would have a difficult time absorbing enough nutrients to sustain growth. (Hmmm...she has had zero net weight gain since January...) I've heard from several other GJ tube parents that their GI doctors have them refeed portions of the bile they drain out of their kids' stomachs, so I asked her if we should try doing that. She said that she doesn't want to do that because when the bile comes out of the stomach, it's contaminated with whatever else is in the stomach and could cause more harm than good. I'm glad she feels that way because the whole idea of it grosses me out. :)
We discussed the possibility of changing the tube again just to see if it would make a difference but before we do that, she wanted to talk to the radiologist at PCH and also email Dr. DiLorenzo at Nationwide Children's in Ohio and see if he has any insights or suggestions. She also said that the pancreatic enzyme labs & whatever other labs they ran hadn't come back yet so she'll call me in a couple days & let me know what those turned up and if Dr. DiLorenzo has anything to offer.
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