Hi. I wish I would have come across this post earlier.
My mom is 74 and has been on a vent since Nov 2006. She spent 1 month in ICU then transferred to an LTACH. 2 weeks ago we moved her to a vent hospital in Rockcastle County Kentucky. They are supposed to “specialise” in vent weaning so we are hopeful they can get her off the thing.
She is still paralised from the shoulders down and cannot talk.
She gives up ALOT, I guess because of her age. She also had a doctor (at the LTACH) who told us it was pretty “grim” and we should be prepared to put her in a nursing home and keep her on the vent for the rest of her life. This was totally unacceptable to us and I told the doctor so.
I have had a very hard time with finding doctors, nurses and RTs who are familiar with GBS. Although for some odd reason it seems to be getting more common. Makes me think there must be some new trigger out there that people are not yet aware of.
All I can say is – Don’t give up! I have been there (as others on this board know – I can be very negative about recovery because sometimes it does feel hopeless) but it doesn’t do anybody any good. Especially the person with GBS. We try to be as upbeat as possible for my mom and tell her she needs to work really hard to get off that vent.