Post BMT Day +99
Post BMT Day +99
Today was long but successful. Tate had her echocardiogram and Pulmonary Function Tests to start out the day. I’m able to draw labs at Brent’s Place and send them with a courier. This saves us from having to be at the hospital so early. The PFT testing is actually quite challenging. It’s complicated breathing patterns into a tube while your nose is clipped shut. You’re shut into a glass box that is pressurized in some way. The last time we did these pre transplant, Tate was pretty sick that day and struggling with lots of uncontrolled psin. it was challenging. I recall Stacy, our sweet nurse coordinator bargaining with a cake…..remember that butterfly cake? Stacy stopped in this afternoon and it felt a little emotional to think how full circle we’ve come. Back in December we didn’t spend two seconds dreaming about day 100. It’s literally been one day, more often, one moment at a time.
Bone Marrow Clinic and biopsy was next. More labs were drawn based on some of the mornings results and we saw one of the PA’s. Tate currently has ingrown toenails on 3 of 4 sides of her big toes. It started with one a month ago and continues to spread. The fun of a poorly functioning immune system. Due to her gut issues, we’re trying everything before antibiotics. More soaking and antibiotic cream. Not a big deal, but a painful annoyance for sure.
We are weaning steroids again! We are thrilled about this and are praying the labs that count continue to trend in the right direction. It’ll take a month or so to get her off these and back to her maintenance steroids that she’s always on for her adrenal insufficiency.
The biopsies went fine. It’s so nice that they have a propofol unit with procedure rooms right in the hematology/oncology clinic. You literally cut out hours compared to if it’s done in the hospital procedure center downstairs. They were backed up today so our 10:30 biopsy turned into a 12:30 one. No problem except……
Tate had a date with Charlie Puth. She was just waking up about 1:00 and she was scheduled for 1:30 in the studio downstairs. Tate was a little groggy yet during her time slot, but pulled it off in Tate fashion. Such a fun experience! There’s a video posted in the comments.
We picked up prescriptions where I no longer have to say my name and headed home. Tate rallied for 30 minutes of virtual teen night and crawled into bed at 6 pm. So proud of how she powered through today. Test results pop up on my chart and although I can read them, the more nuanced variances don’t mean a whole lot to me, so I’ve learned to not stress over what I don’t understand as most of the time is a normal variance. More labs were sent for TMA due to further dropping of platelets, and the bone marrow would’ve been a next step so the timing was perfect. The Bone marrow biopsy results will take a bit longer to come back and I should receive most everything else in clinic on Monday.
Tomorrow….the official Day 100 is our first day off since discharge a month ago! We haven’t decided yet what we’ll do to make it special as Tim still isn’t feeling great and Keira is off to a team training camp for her college team this Fall. But…we’re pretty accustomed to playing the day by ear and looking forward to not rushing off to appointments in the morning. So many emotions to process as we reach this milestone.