Lyla is a week post-op and feeling tons better, she is up and walking like a champ.
She was vomiting a lot at first, but it as slowed down. Her body has been producing a lot of fluid in her stomach, which is making her stomach up set.
She started pooping on Wednesday, and now almost every diaper changed has poop. Life with a short gut!!!
We attempted to feed her on Friday. Very slowly 3ml/hr, and it only lasted 3 1/2 hours before we had to stop feeds and drain her stomach again. Over the weekend we drained her stomach off and on, not eating or anything, just a closed g-button for a few hours, then drain for a hour. Her body can produce a lot of fluid within just a few hours. I have no idea where its coming from!!?!?! Surgeon says"Its just a thing short gut kids do" I've never heard of such a thing. For example Lyla's stomach was empty. Then got 3ml/hr of pedialyte for 3 1/2 hours, 3ml/hr X 3.5hrs= 10.5mls, so there shouldn't be more than 10.5ml in her stomach. I checked her residuals (what was in her stomach, which I can suck everything out of her stomach with a big syringe through her g-button) There was 60mls in her stomach. Although she's been having so much mystery fluid her surgeon wanted to try feeds again today. He really wants to push her this week, because its been long enough he isn't worried about the hookup, in term of it healing. If we make no progress this week then she will get another barium enema to check for dilation, narrowing, blockage, & movement. We started feeds, 2ml/hr, this time of half formula & half pedialyte. She vomited shortly after starting it, but the doctor really wants to push her, so we kept it going, it ran for 2 1/2 hours, and we are giving her a hour break off, because she is so uncomfortable, screaming crying. We started feeds again a hour later and she vomited about a hour after that, then again a hour after that. So we stopped feeds once again & will see what happens!!
We got results back from her liver biopsy. There is the expected liver fibrosis and inflammation due to TPN & Lipids, but also from another source. Could be from a viral infection, autoimmune disease, or less likely drug metabolism. Lyla had a large blood panel drawn, testing for HIV/AIDS, Hep B & Hep C. because she has had 14 blood transfusions. Doing multiple labs to check for autoimmune diseases, like autoimmune hepatitis, where the immune system attacks the liver. All labs are still pending, and I am anxious for results. Her liver damage is at stage 2, meaning enlarged, inflamed and bridging fibrosis, but not yet cirrhosis.
