Child dies of complications from the flu

The flu is really bad this year…I was really really scared for about 24 hours when Noah was sick and in the hospital. I’m so used to having the more serious health problems, it hadn’t ever occurred to me that I could lose him…

(I’m so focused on the idea that they will solve it and Noah will have a normal life, I don’t even know what I would do if he died of an infection before we got the answer. I would never forgive myself.)

The good thing that came out of it, was that Noah’s flu inspired me to get back on the horse and do whatever we can do to try and solve this and get the answer. Noah would start feeling a little bit better with some IVIg (and it definitely would help him gain some weight—IVIg is actually an off label use for anorexia—), given how sick he was last week, it made me start to really think about it…maybe just a low dose…

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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