Update...

Sorry it's been so long. Today was a pretty good day finally pain wise. Thursday night my headaches were ridiculously worse, to the point where I was even vomiting, so they did another scan of my head. Apparently the person who "reads" the scans at night didn't look at my scan very well, because he informed the doctors that the scan remained the same and that there were no changes. When I woke up the next morning there were 6 doctors over my bed asking how I was feeling because the scan last night was since re-read and not only did I have a clot in my head but I now also have a bleed in my head. How can someone be a risk for blood clots also be at risk for bleeds?? Aren't those exact opposites? Oh the joys of PNH. (Paroxysmal Nocturnal Hemoglobinuria) So they got all of their "teams" together and had some meeting about me and decided that at this point the bleed has to be my main concern, and we will worry about the clot down the road. So they have taken me off of the blood thinning medication I have been on for years and are hoping that over the next few days the bleed will be absorbed back into my body leaving me with no damage. After this has happened the doctors know that they need to restart my blood thinning medication, but careful as to not create another bleed. Sorry if this is getting a bit technical. The problem with this whole situation is that there is no textbook answer as to how to deal with it. This is definitely not an everyday occurrence and so the doctors are literally a little stumped have even admitted there lack of knowledge to me. I appreciate this honestly. They are calling other doctors all over the place including my other specialists. I really feel like every precaution is being taken, but it is a bit unnerving feeling like you are the only person this has happened to. (Although I realize I am not) Today marks 9 days in the hospital, and I was told I will probably be here at least another 5 days. I will try to post again when I hear news...but I have been told this is somewhat of a waiting game. And were hoping for a boring game.