Monday, February 11, 2013

The Saga Continues

"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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