Post BMT +161
+161
Thsnk you for the prayers! GJ exchange was super rough this morning. The combination of constant nausea and stomach pain, medical trauma, and neuro challenges made it terrifying for Tate. But, we were sent THE most patient interventional radiology team ever. I continually chanted in my head, “Don’t give up on us, don’t t give up on us.….” I was certain they were going to bail at any moment. They didn’t. Even when I wanted to. They, along with Caroline, our bmt childlife specialist, were amazing. Anything less and I wouldn’t have made it which means Tate wouldn’t have either. Tate literally sobbed out of relief once it was done. I wanted to run around the room giving out High fives. Stressful and traumatic, but BIG win today.
We got an answer to all that abdominal pain and nausea and just discomfort that constantly plagues Tate. Abdominal X-ray showed bowel loops with air fluid levels. Per interpretation, this “screams inflammation and ileus.” No blockage, but many sections throughout Tate’s intestines are completely non functional. I haven’t talked to Tate’s GI specialist yet, but other thoughts are that this is EDS related causing the severe dysmotility that is exacerbated by narcotics. We are running 5 ml/hr of pedialyte through the J tube (1 tsp/hr) It’s barely anything, but it’s progress. Tates gut isn’t really able to move any food in solid form through. So we are sticking to liquid enteral feeds and oral liquids (if tolerated) for now.
Nothing has popped on the blood cultures yet. If nothing shows by Friday and she doesn’t have a fever past Thursday morning, we can be discharged Friday. That leaves a few days left with the boys and Keira at home. Everyone came to visit today. Although Tate wasn’t able to be awake, it was so nice to all be there n the same room….even a hospital room.