Never Ever Give Up!
I couldn’t respond to your post fast enough. My mother (72yrs) was diagnosed Oct 2004 with severe GBS. I have asked many times on this site if others have been vent dependent as long as she, and it’s hard to get an answer. I think most people are able to get off the vent within 6 months or so. It must be more rare for GBSers who are vent dependent longer to get off later. My mome, like your husband, was completely vent dependent for a very long time. For the past year she has been off the vent during the day, then would go on only at night – more for rest and fatigue than for lung functioning. Little by little, slowly, slowly, in bursts and spurts and back steps, she continues to progress. She has been off of her vent completely for one whole week now! She has been told many times that she would never walk, that she wouldn’t get better, that she needed to adapt to that. But she lives by the motto, “Never ever give up”. And guess what? She’s proving everyone wrong. Just last week MY MOM TOOK HER FIRST STEPS IN 2.5 YEARS! She went 35 feet. A week later, yesterday, I watched as she went 50 feet without stopping, sat and rested, then took 50 more. Believe your husband will improve. Believe it. Believe it. Believe it. Convince him that he will. And he will! Prayers and knowing how hard this is for you. And knowing too that he will continue to improve!
Katy in Phoenix, AZ