Myles is breaking medical ground

Hey everyone,
Sorry to say but we had another really hard day yesterday. Everyday seems to be so different. When one thing slows down or goes away...another seems to come up. The donor site itching seemed to be slowing way down and the blistering was just here and there. Over the weekend I started to notice that Myles' left arm was turning very blotchy red. Well by yesterday morning when we removed his bandages he had deep burgundy spider veins all over his arm and was in tremendous pain. I called the Burn Unit to see if this was a "normal" part of healing (as was the blisters and the itching) and they said no. When the pain kept intensifying I took him to the Hemophilia Center with him screaming in pain the whole way there. As you have seen in past posts, we had taken him off of the Lovenox shots and put him on oral Warafin to thin his blood. We have been taking blood tests every few days to get his Warafin to a level of 2.0 - 2.5 (INR) which is needed for a normal person with DVT. We started at two mg/day and by last Friday had increased him to 4.5 mg/day. At the center, they checked his level and it was at 2.0 mg, right where it should be and with him getting Factor IX everyday we had finally reached our goal to maintain his blood clots. Wrong!! At 2.0, the Warafin was overriding his factor and his blood vessels were breaking in his arm from the necessary pressure garment. Ten hours later, lots and lots of morphine, a CT scan, and more morphine, the decision was made to take buggies off of the blood thinner completely as his grafting and donor site healing is the most important issue right now. We can only hope and pray that the blood clots like where they are and not migrate. He will be on oral morphine for a few days to help with the extreme pain he is in from his arm. The morphine does make him itch terribly but I think that he can tolerate the itching more than the pain. It was very hard for me to see him in so much pain yesterday as I thought that maybe those "extremely painful days" were over.

I know this is a lot of info, but Myles is breaking into new territory for doctors, around the nation, regarding burns, hemophilia, blood clots, thinners, and treatment of the above. There are doctors here in Boise, Salt Lake City, Denver, Orange County, and the Shriners that are all following his progress to better aid in the care of any future person with hemophilia that has been burned to this extreme. Myles and I are grateful for this, but I am sad that my son is the guinee pig, God's Will will prevail.
Sherry