June 4, 2026
Today wrapped up a big medical week for Tate. Botox for migraines on Monday and long IVIG days (8 hour infusions) Tue, Wed and Thur. Yes! We ARE approved again.
Tate had a couple days of fever in there this week and Wednesday brought blood cultures again. I’m grateful for providers that don’t push an automatic 48 hour admission, which is protocol for fever with a central line.
She has been without her biologic that was started inpatient for a week due to more insurance/logistics issues. She has had a return of some of the neuro symptoms likely due to the delay in IVIG, but I think also due to missing a week of the biologic. The good news is we are seeing some benefits and tonight she was able to get her IV dose again due to approval. I’ve spent WAY too much time on the phone over this med last week and this week, but it was worth it as we now have access to it again.
Overall, Tate really just hasn’t felt well since she was discharged. With the addition of Keira, there’s been SO much medical in this house.
Keira’s symptoms returned Sunday-the day after she was discharged. She’s been running fever, had refractory nausea to add to all the other things. We really had many episodes where we were so close to taking her back in. But I thought if she could just hang on, we could cobble together an outpatient plan. The idea of more time in the hospital is so so hard to wrap our head and hearts around. We haven’t had “normalcy” in almost 3 months and are so tired. We’re getting there, but it’s been a really difficult week! Tonight is the first glimmer of hope I’ve had that Keira is moving in a more positive direction.
Keira still has a lot to work through. And I’m hoping that the ivig and getting the biologic back in Tate’s system will help her too. Pain has been such a beast again for Tate. Baby steps.