Post BMT +34
Day 97
Post BMT +34
Today was a big day.
The morning started with a care/discharge conference at 7 am. All applicable providers were there to weigh in on what needs to happen in order to get to discharge and what Tate will need after discharge. Prior to this morning, the thought was that she needed to: 1. Get off the pain pump (7 days and counting) 2. Be able to tolerate oral or g tube meds (almost there.) 3. Be taking in adequate fluids and nutrition (nowhere near, especially the last couple days, but can leave on G tube feeds with fluid boluses and/or iv fluids) and 4. Have enough strength back to be able to navigate up and down our home stairs to her bedroom and a bathtub.(long ways to go.)
The consensus was that 1-3 are attainable within the next couple weeks. # 4 will take much longer especially in light of all the pain med changes. Bmt does not want her moved to any unit outside of BMT as her risk for infection there is greater than it would be in an isolated environment outside of the hospital. So….we will be going to Brent’s Place next. It’s a group of apartments with a central space that is reserved for BMT and cancer kids in active treatment. All kids there are basically immunocompromised, so it is run accordingly. Having us go there next (no stairs,) will allow us to leave sooner while still being on campus here for therapies and appointments 3-4 long days each week. They like the idea of having her close as due to what she came in with, her after care will be complex and involved. We all believe Tate will make faster progress outside of the hospital with intensive rehab than through an inpatient rehab program. She will be able to see kids that look like her and that understand what she’s dealing with in a way only they can. The isolation here is at times suffocating. She would have even less social interaction at our home. Keira and Tim can come and stay as well. It isn’t home yet, but it is the next stepping stone to getting there. We are grateful for this option!
And we have a tentative date/week for discharge!The aim is sometime the week of April 18. It feels so good to have plans towards the next step!
The rest of today centered around the ever changing medical. It was a more difficult day for Tate pain wise. This aspect will only get more challenging as we countdown to getting off the pump. We added another dose of magnesium as she’s still needing nightly infusions. This will likely upset her stomach further until she adjusts. There was discussion about the concern over the active cmv infection. It hasn’t just disappeared the way it was hoped it would despite the antivirals she’s on. They are watching closely as the complications should this virus decide to grow bigger, are big and scary.
Grateful for a plan! Grateful for an attentive team whom are willing to work together towards the same goal. Grateful for a God that orchestrates it all. Grateful for you all who continue to love us so well and cheer Tate on!