"Christian's" knee bleed is
continuing to heal and his ankle starts to swell on Sunday afternoon. He has been off his feet in a wheelchair and
he has an ankle bleed. Spontaneous
bleeds seem to be our thing.
Dealing with a bleed
is difficult, but when you have two going on simultaneously, it's a little
scary. When his right ankle bleeds we
get extremely concerned. This is a
target joint and it often causes such great pain that he has to be
hospitalized.
We infused 6 mgs of
NovoSeven and called the HTC. Our
hematologist directed us to infuse 6 mgs. Every 4 hours until the
morning...Yikes! We'd never done that
before and I was a little nervous. After
a few phone calls I felt a little more reassured that the dosing would be okay.
Christian slept
through the night. I could not believe
it! I was about to pack a bag and have
it ready for when he started to scream in the middle of the night because I was
so sure his pain would get unbearable, but the big doses of NovoSeven have
helped to get this bleed under control.
We are now at 3 mgs
every 4 hours. His ankle is not burning
hot and the swelling has gone down.
This is not a
perfect situation, but boy am I grateful that we are still home, he is not in
pain and we have what we need to treat.
I would say that I
look forward to a "normal" week, but what does that really look like?
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