My child with Primary Immunodeficiency is sick

I've spoken to Akron Children's Hospital twice this morning.  I waiting to hear back from Gavin's immunologist, as to what we are going to do.  The nurse is thinking that even though it's a virus, we might do antibiotics. The reason is that he's at the tale end of what's left of his donated immune system for the month.  He's due for his next infusion in about a week.  Also, because he is sick, he's in a weekend state and we don't want anything else creeping in and kicking him while he's down. Gavin's using his rescue inhaler 4 times a day and we are waiting to hear back from the doctor, as to what we need to do next.  As soon as I hear anything, I'll let you all…

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Heartbreak and crushing guilt

When I see my kids struggle, in any capacity, I feel so incredibly guilty because I can't take their burden away from them. I can help them to some extent, but in many cases I can't. I feel guilty because I can't provide a better life for my family, even though I'm already doing everything I can possibly do.

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