Wednesday, August 20, 2014


Fiona's antibiotic is still backordered with intermittent supply. We were able to get a bottle last week. It's a different formula than we've had before and she hates it. She got used to the thin grape liquid, now it's a thick cherry liquid. I mix it with an equal amount of water before I give it to her or she won't drink it.

She seems to be doing better this week. We reduced her Hizentra dose by a gram. I'm worried about what that will do to her IGG level, but I'm glad she feels better. She's sleeping better too, which helps us both.

I'm starting to really feel like now is the time to figure out if she would benefit from a bone marrow transplant. If the problem is in her bone marrow then it would fix her problem. If the problem is in her thymus then a bone marrow transplant won't help. Her thymus appeared normal on a CT scan. I'm going to ask for a thymus biopsy to rule out a problem with her thymus. It's so frustrating to know something is wrong and not have any answer or solution.

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