[bochs4]

Neil,

A big thank you to you to for all that you do in keeping this site up and running. Like i said it was my number 1 resource for info during our family's journey. I would always read your respones to patients that had questions. Thanks again for taking your time and energy to help educate people that have been faced with this horrific disease.

Back when Jeff first went back into the hospital for his arm is when we went to Indiana to be with him. The doctors had kind of wanted us just to stay put until he his white counts were up. But when the infection came we knew that it may be our last hours with him so we went to be with him.
Well all that did was stir up problems the moment we got there. One very important lesson that i learned in Jeff's 3 week stay in ICU was that i couldnt posssibly have been prepared for what was about to happen. I would have thought that my family would be calm and handle things professionally. But when it came time to make decisions about his life we were as unprepared as anyone. I told Jeff that his disease was one catastrophe but it led to a another catastrophe with the damage that out of control emotions did. All i could think about was how we could possibly be thinking about ourselves in this terrible time. How could we be making things twice as hard on him? I still cant figure it out to this day. You mentioned the doctors and emotions in the same sentence. Well now jeff's doctors are trying to treat his illness and they have a tug of war going on inside of his family to deal with. So yes your right those docs were very emotional but kept them in check when we couldnt. I could see that Jeff had bonded with them like he does almost everyone he meets. The day that they had to send him to the orthopedic hospital they looked as sad as anyone esle in the room. They along with some of the nurses from the other hospital came to see Jeff everyday for the next few days. In the end i was sure that there wasnt a better place or team of docs that would have been better for him. So i guess all i can say to families that are new to this is stay calm and keep the focus on the patient and their recovery because if you dont all you are doing is adding more stress to their ordeal.