1 Year + 126
1 Year + 126
The last couple days have been worse for Tate with pain and fatigue. Facial butterfly rash is back.( lupus calling card.) We had lots of appointments scheduled for today. Our GI Dr. takes great care of Tate and is always one of the first to visually “see” that Tate isn’t doing well. After our telehealth appointment, she got the ball rolling and by the time we saw endocrine and special care at main, Tates rheumatologist had already ordered all the labs including blood cultures. Labs are back and definitely indicate either a flare or infection. Neither are good. An infection is actually probably almost easier to treat but would require an admission.
Tate also continues to drop weight very fast. Multiple pounds each week. She is eating, but can’t keep up with whatever is happening with her metabolically. So much to her dismay, she’s back on supplemental feeds through her J tube. She’s worked so hard to get here, she feels disheartened that her efforts aren’t quite yet enough.
We did get some feedback on her kidney biopsy today as well. It had to be sent to a special pathologist after the Initial read-the 1st 3 weeks. Tates nephrologist is now connecting with a pathologist to review the slides together, which explains the last 2 weeks. Hopefully by the end of this week we’ll have the final report. The good news with all this waiting is she’s not experiencing emergent inflammation. But clearly, there’s been “something” to hold things up. What a journey this ‘simple’ biopsy has taken us on! Thursday brings more appointments along with whatever is added from this. It’s only Tuesday!