Post BMT +151
+151
Day 10
A rare smile this weekend from Tate and Tim. This weekend was beyond tough. So so thankful for Elise and Shelby and Kaila, Mer and Alli, komal and all our nurses that were here this weekend to offer kind words, understanding hugs and served as a reminder that we aren’t as alone as it feels.
Tatum’s current issues really don’t fall within the BMT realm, yet they still (and will for a while,) serve as her primary team and essentially call the shots among all her outside specialists. This is proving to be very challenging. I learned this weekend that neurology didn’t actually show up to the care conference…the whole purpose it was called was to get them on board. Frustrating. But we did get a new neurologist who is patient and kind. All of the labs he ordered are being processed and LP is now slated for Tuesday. Beyond that, the tentative plan is to connect us with the multi disciplinary clinic for further follow up. I’m not sure yet how that will look but am trying to be hopeful that it’ll be what we need. We are needing a solid plan in place prior to discharge as specialty clinics can take months to get into…..a luxury we don’t have when quality of life is currently so poor. After summer #2 spent in the hospital, and August starting tomorrow, we are desperate for some kind of life outside of the hospital. But when you’re barely functioning within hospital walls, the prospect of normalcy outside of it feels so out of reach.