Thank you everyone for your responces! I find that the spell checks rarley catch ALL of my spelling errors!
I called the RO yesterday and he said that there is no way that it could be withdraw from fentenyl and to keep him on 100mgs. I couldnt watch Charlie suffer anymore and cut a 50mg in half and he is now on 125mgs. He is doing much better- his throat just hurts more and he takes the same amount of morphine for breakthru pain. Is that horrible? I refuse to watch him suffer when there is something I can do about it- I am with him everyday, not the oncologist. I know with time (not 3 days) Charlie will be able to come off his meds, but it is not going to happen in an ER. Being an advocate is difficult here(is it just New Jersey?) becuase these 'medical professionals' can be hard (like the MO asking about what Charlie was going to eat for Easter dinner when Charlie wasnt able to swollow with out horrid pain and he just ordered 2cal for his PEG tube) and being so young doesnt help. But I do it with PRIDE!
The doctor also said that it was routine that the CT and PET Scan are being done- he was just following him closly, but when I told him that I noticed Charlie's vocal cords werent moving. He said that they were sluggish, but not to worry. I wonder when that day will come!
On a better note- Red Book Magazine mentioned OCF in a an article on Gwenth Paltrows father. Also - Charlie and I have a wedding website for anyone who wants to take a look:
www.deliaandcharlie.com Thanks agian for the great advice (and a smile- Gary)
