My “Christian” has been in the hospital since Tuesday and in huge amounts of pain. He has been screaming in pain “My ankle, my ankle!” He’s now on a pump with continuous morphine flowing and he still cries out in pain. The measurement of his ankle has gone up instead of down and I am extremely concerned. We are waiting on his inhibitor results to come back in and I am at a loss. I don’t even know what to think. 4 mgs of Novoseven are being infused every two hours. I was hoping to see things at least stabilize by now.
Fortunately many people do not know what it is like to see their child in extreme physical pain. Even when it happens time after time it’s something that does not get easier. You never get used to the painful screams, seeing your child constantly scratching themselves raw from the pain meds, the anxiety that develops when they have topped out at the amount of pain meds they can receive…monitors, oxygen….it’s just not convenient when you are a six year old.
