Nov. 23, 2024

Brief update… Really not much to say. No one really has an answer to Ela’s tummy issues, so we are just managing symptoms as best we can. They have done lots of tests and all have come back fine. There are a few more results we are waiting on. The 2 working theories as far as diagnosis are 1) a toxicity to one of her life-long anti-rejection/immuno-suppression meds 2) Small Intestine Bacteria Overgrowth (SIBO). It could be something else entirely, but those are the contemplations right now. They put her on a motility medicine that has helped her distended stomach, but we all think there is still something underlying going on. She was on pedialyte and fluids for a week. Now, we are very slowly re-introducing tube feeding amino-acid based formula. One of the tests to check for SIBO cannot be done until Tuesday. Ela will definitely stay in hospital for at least that long. Overall, her heart remains stable at the moment; though she has had some arrhythmias because of low potassium. The upcoming December cath was changed to Dec 3. This cath, they will also do biopsies to check for rejection. We appreciate your continued prayers so much. She is ready to be home. We all are. Enjoy this video of her playing! (Notice she puts band-aids on almost all her stuffed animals haha)! She usually has at least one on her so I guess it makes sense.