“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?
