Thursday, March 20, 2014

burnt out

Our next appointment in Cincinnati is the first week in April. I'm not sure what the plan is, but I want one going forward. If we don't sequence Fiona's genes there aren't any more diagnostic tests. I'm going to ask them to test her CRP, which is used to check for autoimmune diseases. I'm also going to ask for t-cell and b-cell levels as well as function, these are the things I feel need to be monitored.

It seems strange to think we are at the end of trying to diagnose her. They've come so far in understanding our immune systems, but there is still so much they don't know. It's only in the last 20 years that they found people with t-cell deficiencies outside of AIDS or SCID. AIDS research is the main reason that t-cells are understood as well as they are.

I'm starting to feel burnt out trying to learning about what could be wrong. If she's stumped the doctors, am I really going to find the answer? There was a time that I could tell you almost all of her numbers from her labs. Now it seems like too much effort, and it feels like they don't mean much anyway. They go up and down so frequently that I've stopped keeping track. Pretty much I feel like as long as her labs stay low, but stable we are just going to watch and wait.

I hate feeling like she is always at risk of developing a life threatening infection. We are protecting her with infusions and antibiotics. I think this summer we will test her immune system to see what happens. I'm not sure I will ever feel comfortable taking her to a crowded place, or sending her to school.

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