April 15, 2025
Day 75
Tate did okay overnight as far as no obvious fevers. It’s hard to know if she’s brewing something, but currently seems to be holding steady. Today was a tougher day but by late afternoon, she rallied and has been awake and did some painting.
We tried a new pain plan today without any IV meds (which is the key to a home pain plan.) Tate is scheduled again for IVIG infusions up at North Campus Thursday and Friday. So even if we were discharged, we’d still be at North Campus hospital Thur/Fri. So…we will run day one of IVIG overnight tonight and day 2 either late tomorrow, or overnight tomorrow. Pain team wanted to see how Tate did on the new plan, with some potential tweaks again tomorrow to Tates IT pump, getting us home hopefully Thursday.
I should know better to not share before we actually have the green light, but I’m so excited to be home! Drew flies in tomorrow night. Since Tate and I missed the March family trip, we haven’t seen Drew since Christmas. And we need to break the pattern of Tate being in the hospital every time Drew is home!
We know the return home will be physically challenging for Tate as she has a lot of ground to make up while now battling heightened daily pain. But she’s working as hard as she can and will absolutely make the most out of every day shes given.
Our goodbyes started tonight at end of shift. Tate has a big primary nursing and CA team filled with amazing humans that are our sweet friends. Nurse Meghan is one of Tate’s best advocates. She made all our days so much brighter every time she cared for Tate (and Tate’s mom too.) She represents a whole floor of really special, caring individuals. Tate spent time with Cole and Lily and Ruffles too today. Cole comes up with a way to connect with Tate and support her every day. Childlife is over worked and under paid. They make their time look like play, but they are one of the very most important team members. Cole and Lily (among others) brighten Tate’s days while inpatient.