Tuesday, January 21, 2014


The box was delivered at 3 this afternoon. After going over how to work the new pump I started her infusion at 4:40. It took 3 hours, our normal time is half that. I think there may have been a problem with the tubing, one of the three tubes that feeds the injection site was moving slowly when I primed it. I'll call and ask about it tomorrow.

I like the new pump. It doesn't force the liquid through the tubes with as much pressure. I think it will be better for her in the long run. My only complaint is that it's huge. Her old pump was a little bigger than a deck of cards. This pump is the size of a carton of eggs.

There was a mix up about the dose of hizentra. We were sent 3 grams per week, but she takes 5 grams. They've cleared up the problem and are sending more bottles. Accredited will only send one size of bottle, so I have 5 bottles for each treatment. Filling the syringe takes a lot longer than it did with a 1 gram and a 4 gram bottle.

I'm glad to be done fighting to get her medicine.

Fiona's fundraiser

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