Thursday, October 3, 2013

Today's treatment

The new treatment was very different. Our nurse didn't know how to program the pump they sent, but I figured it out. The pump is so small, almost the size of a deck of cards. The needles are tiny, about the length of a thumbtack's metal part and a litter thicker than a sewing pin.

This infusion went into her legs. Next week we will probably use her tummy. By the time the treatment was done Fiona's legs were pretty swollen. She's getting 7 mls in each leg, which is almost a teaspoon and a half. When we got home she slept for almost four hours. When she woke up the swelling was gone. She isn't eating like she does after IVIG. Maybe that will come later?

Next week the nurse will come to our house. The doctor told us that she would come for the first six weeks. The nurse said she will come for three weeks unless there's a problem. I think three weeks will be fine. It's not complicated.

I think the worst part of the treatment will be keeping Fiona occupied for an hour. She can walk around and play a little. It's good to keep her distracted, otherwise she notices that something is taped to her leg and she picks at it.

Overall I think it went really well. Much easier than IVIG. She was less traumatized. By the time the swelling went down she was back to normal. Next week will be even better because she will have more distractions at home than she had in the doctor's office today.

We met with the doctor for a few minutes and talked about an eventual diagnosis. She doesn't really have Severe Combined Immune Deficiency (SCID). Her's is a moderately severe type. They don't really know what to diagnose her with. They've talked about Common Variable Immune Deficiency (CVID), which is kind of a catch-all diagnosis. It doesn't fit well either because usually it's just one variable, and she has a couple. In the future they will do genetic testing to see if they can come up with something. Like I said, she's a unicorn.


  1. I'm happy to hear it went so well. Once you start doing it at home, you'll get it down fast I'm sure and over time it may become a less stressful event. Thinking of you often!

    1. It is getting easier. Thank you for thinking of us.