Paul survived two close calls last summer. Twice my wife and I sat by his bedside all night as he struggled to breathe. With each breathe we wondered if it would be his last. I thought about him as a child running every where, always happy always laughing. All during those nights visions of his childhood kept coming into my head. The school and church plays he was in. Playing AYSO soccer games where he and all the other children swarmed around the ball and no one played defense. So many happy memories, how did it come to this watching and waiting and expecting to lose him?
Good news is that we found a doctor at the hospital emergency room who correctly diagnosed enthesitis which is inflammation of the rib joints and muscles. The swelling was keeping him from breathing. We then got a new rheumatologist who diagnosed him with Ankylosing Spondylitis on the basis of "cupping" damage in his lower back vertebrae. The new rheumatologist gave him shots of cortisone which got Paul through the immediate crises. Then changed his medicine form Enbrel to Remicade. For me a very frightening change as Remicade is made of mouse proteins and can cause frightening even fatal adverse reactions. Since Paul has a tendency to have adverse reactions to many drugs Remicade is scary.
However so far so good, he has had five infusions of Remicade still no reaction. We are keeping our fingers crossed. Good news is that he is still alive. His voice has gotten a bit better and even recently was able to pick up a small rock with one hand! Still he cannot use a computer mouse or get his own food or water.
We continue to try to get Paul access to miracle medications not yet approved by the FDA or the F"ing" DelAy as it is known in our home. One of those medications has finished all clinical trials (I, II and III) with astoundingly positive results. The manufacturing company applied for a Biological License Application last December. The underfunded (by Bush admin) FDA with their overworked application processors say it will take two to five years for them to read and approve the license. That is the F'ing' DelAy for you.