Thursday, March 12, 2015


Fiona had her pentamidine infusion last week. It was okay. She had to be stuck 5 times to get her IV started, and 4 of her sticks they used an ultrasound to see the vein. Having to be stuck that many times is pretty traumatic for her. This will be a monthly infusion.

I'm starting to think she may need a port. For anyone who doesn't know, a port is a small medical device that would be implanted under her skin. It connects to a vein with a catheter. Her veins have never been great, but we've avoided a port because she's only getting blood drawn. Getting a port would allow them easy access to a vein when they need it. The downside to a port is that it can get infected. With her immune system that would be bad. She's also growing, so her port would have to be replaced a few times as she grows.

Her last labs came back and they look okay. They aren't normal, but they're pretty normal for her. We're waiting to hear what our doctor in Cincinnati thinks about her numbers, and about a port.

She's still healthy, which is nice because she had a pretty long stretch of infections starting last spring. We're starting to think about taking her back to church in April. She escaped the house for a few minutes yesterday and loved it. She was climbing over a snowbank, throwing snow balls, and taking our neighbor's invisible dog fence lawn flags for a "road rally" (thanks to the Mickey's Road Rally cartoon). These are the days that the mommy guilt really kicks in. I'm always trying to weigh the risks. I hate that she doesn't get to have normal kid experiences.

Lately I've been reading about Idiopathic CD4 Lymphocytopenia (ICL). That's just a long way of saying that they don't know why she doesn't have enough CD4 t-cells. CD4 cells are also called helper t-cells, and they are the t-cells that most people know about because of HIV and AIDS. Fiona has a significant helper t-cell deficiency, but she doesn't have HIV or AIDS. Her immune deficiency is called a primary immune deficiency because it's genetic, not acquired, like HIV or AIDS. Because her other t-cell lines are low, I'm not sure that ICL fits her well.

No comments :

Post a Comment