May 20, 2026
Prom wore Tate out. She slept the weekend away and wasn’t out of bed much. She was starting to feel better Monday afternoon, just in time for 3 days of IVIG and to meet baby Greta. She is the daughter of Tim’s intern and was born the day before Tate was admitted in March. She’s a doll.
Tuesday we got to the hospital for Tate’s long infusion day and learned insurance denied these infusions as well as the location (Children’s CCBD infusion clinic.) IVIG is a donor product and very expensive. It was running $150,000 every 21 days for the two day infusion. We’ve now added a 3rd day.
We still got to see our North team. Thanks to their flexibility we knocked out Tate’s last iron infusion in this series instead.
Tate’s rheumatologist, Dr. Moore was sending 3 am emails, trying to get this turned around. She was hoping for a peer to peer review yesterday in order to still get these in this week. Tate doesn’t do well pushing these out-they are what keep her brain inflammation in check.
But….
It’s not happening this week. And scheduling these 3 back to back 9 hour infusions isn’t easy for CCBD or for us amidst other already scheduled appointments. Why would insurance deny now!? Likely there isn’t a good explanation. We run into this every few years it seems. They’re on a roll….Tate’s biologic was denied too even through the appeal. Overall, so grateful for insurance-we’d definitely be homeless. But sometimes the no rhyme or reason to decision making is frustrating. Especially when my girl suffers because of it.