Monday, December 23, 2013


 Fiona's fundraiser

It's been a busy day. I talked to Cincinnati about Fiona's emergency room visit last week. They were a little surprised that we were sent home without any testing. I think they are as worried about her as I am. Our coordinator said that we must feel like we're in limbo. We do. It's hard to wait for a diagnosis.

Because of Fiona's paleness, greyness, and dark circles we are increasing her dose of Hizentra. This increase means that her pump can't handle the volume. I'm not sure what the nurse for our medical supplier will decide to do. They have a few options. There is a bigger pump, but it's not electronic. We could use two pumps simultaneously. The option I don't like is that we could do two infusions a week (I won't let this happen). There may be one other choice, but I can't remember it. It's been a long day.

Today is her second treatment without numbing cream. The doctor's are still exploring pain management options. All of the topical creams have lidocaine, which I think is the problem. She is in moderate pain during the infusions, and I'm not okay with that. Tylenol isn't enough. She kept saying, "ouch, hurts". I'm going to ask if ibuprofen is okay.

I've been thinking about trying a gluten free diet and some foods to try to heal Fiona's gut. Cincinnati said no. They need to scope her before we implement any dietary changes. Any dietary changes that could heal the gut would change the results of a scope.

The test that was sent out to Duke is back. The results are normal. This is the test that can show what's wrong when the doctors are stumped. This isn't the last line of testing, but it is disheartening to loose that little bit of hope. These are the days that a bone marrow transplant seems like a great idea.

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