May 30, 2025
This was a big medical week for Tate. I was feeling pretty apprehensive on the heels of such a difficult week last week. But we made it! Here’s the recap:
Tuesday Tate had OT then her new rheum infusion at North campus. We’d been in appeals with insurance since Tate’s long admission. It comes with potential side effects, and increases Tate’s risk of all types of viruses and especially for shingles. But for some, it’s very effective against lupus, so we decided it’s worth a try. It’s a blissfully short infusion…only about 1.5 hours all in. And Tate did great with it! This one happens every 4 weeks.
Wednesday Tate had her new patient appointment at the hemophilia/thrombosis clinic. In a university building rather than at Children’s, Tate noted how “boring” the designs and colors are. This appointment ended up being long (3 hours)as she had timed labs tacked on. We were hoping to move to an oral anticoagulant, but that’s not an option for Tate. So she’s stays on the twice daily blood thinner shots. But we really appreciated the new provider and the knowledge and wisdom she had regarding Tates complexity.
Thursday and Friday (today,) Tate had IVIG infusions. The highlight was nurse Katie being able to solve Tate’s central line suture issue. It’s been causing burning and scabbing and pain for weeks. Katie rocks and we are SO grateful. Something “small” like that makes all the days better.
The weeks bright spot was getting to see our friends the Stevensons. They are our Brent’s Place friends turned more family. Tate absolutely rallied for a fun afternoon at the Denver Children’s Museum. I was so proud of how she powered through. We had a blast playing with Lizzie and Levi.
Tate is wiped. It will likely be a quiet weekend for her.