2 am comes and he
wakes me up because he is itching. I
wish I remember what his skin looked like because I was pretty bleary
eyed. As he gets ready for school I
thought all was okay because he wasn't complaining. I called the HTC just to let them know about
his fall and they wanted to see him. It
was a good thing because his hives were getting worse. He was admitted and has been getting Benadryl
and other meds around the clock.
Because he has an
allergy history to factor VIII the doctor wanted to see if we could find out
why he was breaking out. At this point
we have no definite answer. It could be
that the Novo Seven was a bad lot number.
Today we are drawing labs for a half-life study to see how all is
going.
One thing I know how
to do is "live in the hospital."
I could get us packed in a moment's notice to get to the hospital and
handle the next bleed. Coming back for
this visit has been different. We
haven't had to deal with pain meds and a bleed and that has been great, but
coming back into this environment has been really difficult. I knew it would be a matter of time before we
would get back on the hamster wheel, but I just wasn't ready.
I have been knocked
out of complacency and back into the reality and ugliness of hemophilia. Caeleb's zero inhibitor titer has meant that
our family routine has not had hemophilia as the main attraction. Our lives
have been our main attraction and it has been wonderful! My heart just hurts being here. All of the painful memories from our past
visits have come flooding back. It seems
like a lifetime has passed. Almost as if
hemophilia was gone.
I loved the
honeymoon. It was a beautiful, much
needed time away from hemophilia. It's
given me a greater appreciation for the times when all is well.
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