Post BMT +63
Day 125
Post BMT +63
Tate woke vomiting today. You can see by these pics how she’s feeling. She’s not well. 2 AM woke her suddenly with chest pain and migraine. They instantly ordered an ekg and watched her. We think it was actually related to her stomach issues. Ekg does show prolonged QT and enlarged right atrium. Both reversible by regulating meds and fluid overload.
They continued to strip meds away today to try and remedy anticholinergic symptoms. Tomorrow they start a new med hoping it will help gut motility.
Tates chimerism from the biopsies of Tates last scope came back showing 50% donor, 50% Tate. This gets a little “Sciencey.”…Tates BMT Dr. Says this number is high already for donor cells in her tissue. He is pretty confident that the “EOE” she was diagnosed with a couple weeks ago is actually donor cells and with another scope and new biopsies, she will show graft verses host disease in her upper GI tract. (GVHD is when the donor cells don’t recognize the new host and choose an area to attack.) This would actually be best case scenario as they don’t think it’s in her lower GI and currently not in any organs. Upper GI GVHD is treatable with topical (drinkable) steroids rather than full systemic steroids. The steroids kids go on for full GVHD can and often do cause life long problems. Without them, GVHD is life threatening. Pray for upper GVHD only!
If there still is no gvhd, he thinks it’s strictly dysmotility which actually is a more long term issue and a difficult one to remedy. Tates BMT Dr. is all sunshine and rainbows (an eternal optimist,) which we do appreciate. So this is the rosy outlook. Tate’s gut issues were developing pre transplant as she was dependent on G-tube feeds already then. So my concern is actually that it’s a bit of both. Scope is scheduled for Friday, so we will know more after that.
Tate’s G-tube is now continually draining bile. We realized today that she really isn’t absorbing meds well. The hope is pulling out the bile will keep her from having to vomit it out and will also allow her meds to absorb better without a full stomach. So far, it’s working. She has slept all day minus her bath and linens. Tate has hardly said 10 sentences since Friday. She asks for meds with one or two words and responds with a lot of moans when she’s not liking the current plan. She’s safe, but she is miserable and feeling pretty defeated. Praying so hard for her to have tangible improvement soon. ❤️🩹