March 31, 2026
Day 13
Today was a little rougher day. Tate slept a lot and was working through all the emotions that come with pain while awake. I received phone calls from Tate’s neurologist and her hemophilia/thrombosis NP. I had a letter with all new information from her rheumatologist, met the new hospitalist team for the week and talked through plans for today and subsequent days. I met with pharmacy to go over some med changes and questions. Tate had visits from zone to go, PT and palliative plus our sweet nurse friends outside of who was assigned her today. Every single interaction, phone call, letter or therapy comes with emotions and conversations and decision making and advocating and just filling caring people in on repeat. Tate gets pain meds every 2 hours minimum on top of her other meds and vitals every 4. She gets IV fluids and today we started IVIG. Vas team comes up for lost IV’s and ti start new ones and she goes down for scans and ultrasounds. Labs are drawn and she’s on a CR monitor 24/7 that has to be disconnected and reconnected for every bathroom trip. Iv poles are taken along and bathroom trips are measured and recorded. We have to do linen changes and a special antibacterial bath everyday. We fill ice bags and come up with creative meals. We attempt crafts and touch base with Tim and the kids. We put in hair tinsel and do laundry. And I try to get as many steps in as I possibly can.
Our door doesn’t stop. Tate puts on an eye mask and music headband and can block some of it out. I’m the bouncer. The historian and advocate. The communicator and the filter. The care taker and the re-director. And underneath it all, I’m mom. And sometimes I do a little momming when our sweet nurses are looking a little worn out too. After all, so many aren’t far off from my kids age. And that part I love.
I was recently asked what do I DO all day!? And this is what I do. Most days I can hardly crawl into bed at the end of the day. More emotional exhaustion than physical. But definitely exhaustion for both Tate and I.
This morning I had coffee with sweet friends over at University hospital…Thanks for filling my cup Tim and Angie…in all ways.
The plan moving forward is up in the air again. If we come back again for Tate’s 7 day infusion with a direct admit, we could, maybe, make it home to be with Tim and the kids for Easter. Or we could be here for another week + depending on how everything goes.
Nurse Molly…one of sweet nurses.