To Our New Family!

July 30, 2006 at 10:06 pm

I wish that Billy could see the outpour of support we are getting from all of you. Anyways, as I told you last, I would be asking questions in the days ahead. So, here we go:
#1. Do any of you have any Idea if there is a GBS rep or counselor in the Fort Walton Beach or Pensacola, Florida area? If so, I need to know how to get ahold of them, or how to find out where to go to find one. I am having trouble explaining to his family that there is no quick fix for this syndrome and the problems that can result from it. And believe me, if there was a quick fix, I would be the first one to insist on getting it. I know they are concerned but I have explained this until I am blue in the face and I am not getting it across to them.
Also, I did not know that we could fire this neurologist. That is something to keep in mind. There is another Doctor that Billy and I both felt comfortable with and that was the Doctor that did the EMG. He was more down to earth and was able to explain his findings to us without all of the medical mumbo jumbo. As Billy would say, “Speak English!” Billy’s pulmonary Doctor knows that I am very concerned and that I will get answers, whatever it takes to do so. And it has been made very clear that there will be no quick moves until he makes the decision to do so and that means that he feels that Billy can hold his oxygen levels on his own, and that his lungs are well enough to handle a trip to be moved. The hospital where Billy is at now is not set up to handle plasmapherisis so he will have to be moved to Big Baptist in Pensacola. Right now Billy is being given Lasix. The respiratory nurse was suctioning alot of foamy fluid from his lungs today. Also, they have noticed that when they move him from one side to another, his oxygen levels go down. He has a small perferation in his right lung and when they move him to the left there is too much pressure on the good lung. So everything depends on when the pulmonary doctor clears the way for Billy to be moved. Anyways, as I said before, a meeting with a rep or counselor would help so very much. And I hope you know how much all of you have helped already. Not only have you made me feel like Billy and I are not alone in this but you have given me a place to go when I just need a little encouragement. God Bless All Of You…………..Piper