Madison has been sick all week. Last Sunday it all started with belly pain and a fever that reached 101.9 for Madison any temperature above 100.4 is dangerous. I took her to the emergency Sunday evening. The fever broke and an iv antibiotic was given (this is routine for oncology patients). Thankfully we were discharged. The rest of the week was the same. Fevers on and off, skin gvhd rash getting worse, and diarrhea. I've been in contact with Madison's team multiple times a day. We returned to clinic Thursday and today and again thankful they are allowing me to care for her at home. Madison's viral panels have all been negative along with blood cultures. As most of you know hospitals are full of germs and with the 4th floor full of oncology kids with viruses I prefer to avoid if possible.
Madison has been off cyclosporine (anti-rejection med) for two weeks. We have weaned her off of this med very slowly, but we fear the gvhd of the gut is back. Obviously, we don't want to jump the gun so if her symptoms don't get better she will have a colposcopy next week. Madison was weeks from having her broviac line out and was doing extremely well.
At this point she is on iv fluids 24 hours, continuous feeds through g-button, and several meds that have been added back in. We plan to return to STL early morning Monday unless she is worse and will return sooner.
On a positive note her new immune system is working. It is fighting fevers (in the past once she had a fever there was no way to get it down without meds and now it is doing it on its own). Her counts have stayed about the same!!! Thank you God!
Our lives are day by day so please continue to pray for each of us as we handle this bump in the road.
We pray you all are healthy and enjoying the beginning of summer! We love you all!