Good news! JT’s IGg level was over 700 – this is great. Dr. Filipovich likes to keep the trough level over 600 so he’s still in a decent range for this coming week before he’ll get more protection. Here’s the new plan: JT and Jodi will go to Cincinnati next Wednesday where he’ll receive subcutaneous IG. Jodi will be trained on how to administer this at home and if all goes well, we’ll give it once a week here in GC.
This would be awesome for two reasons. First, getting IVIG seems to be linked to the skin flare-ups in a way we don’t understand – seems to be cause/effect. He gets IVIG, he has a flare-up. When he gets subcutaneous IG, the dose is lower and we’re hoping that his skin won’t react. Plus, giving it this way at home will keep him out of the hospital where he’s caught his worst infections in the past.
The skin keeps getting better little by little. He has only one more big scab on his lips and they’re at a normal size again. The calluses are flaking off bits at a time and the new pink skin keeps spreading over the wounds. All cause for celebration.
Thanks for checking in with us and have a great weekend.