April 23, 2024
2 Years 1 Month post BMT
We had some exciting news to share as of an appointment last week, but the week hasn’t quite gone as planned. We are on a trial to cut tpn. Yay! Not so concerned currently about the calories, but more so about getting all the fluids in. The goal was 12 hours of J tube fluids overnight plus her daily iv fluids. Tate has had a rough week whether it’s viral, rheumatic or adrenal related, we aren’t sure. But sleeping 18 hours/day, increased pain, nausea, and all around yuck means in general, we failed. Really soft (low) Blood pressures mean we’re likely back on a pump for IV fluids overnight. But it’s still an improvement over tpn. So we’ll take disappointment with the good.
There’s been a lot behind the scenes over the last couple of months that’s been slowly churning. It would be so easy to share some smiles and pretend all is well. And i really do try to focus on the positive. The reality is Tate’s disease continues to progress. I received an email from the undiagnosed disease network out of Utah today. They’re still processing Tates application that was sent in by Tate’s medical team, but it seems we’re now assigned a site-a good sign. We are hopeful she’ll be accepted into their study. The timing is good as Tates team is calling another care conference. We’re seeing more systemic decline including brain involvement. This is the hardest and scariest part of Tates disease process and really for us to share; To witness but especially for her to experience. There is no label and no treatment to stop it that we know of right now. We continue to try to prioritize what is most important. It doesn’t end up being what you would think.