I agree very much with Dave..
Although a PALS decision to vent or not to vent is a personal one I do feel there are very few PALS that regret this decision..
A vent is scary at first and intimidating ,,,geez I remember hearing people talk about changing circuits.. and thinking to myself now do I have to become an electrician?..I'm not intelligent enough for this...well a circuit it turns out is just a plastic hose ..go figure...there are alll these complex terms that in reality are really simple little things..that have intimidating names..
When Gary was first vented..he was given the option to switch from the vent to a bipap and attach it to his trache ...( which is really a vent that can not stack air)..he said no he wanted a superior machine...he was also given the option to come off the vent for hours a day..he does come off for showers..but honestly I feel more comfortable when the vent is on him...no more sleeping with my hand on his stomach worrying he will stop breathing....and in his condition I couldn't leave him alone anyway..infact off the vent I have to watch him closer..
He had numerous complications due to the disease process and paralysis..and it stinks having to go in and out of the hospital frequently..but I'll say this when he is at home..life is sure alot easier than when he is in the hospital..at home I can do whatever I wish and my monitors will let me know what's going on...I don't worry as much either that something is going to go wrong that I can't handle ...what was at first intimidating I trust myself with almost as much as any other person..as I know his normals better than anyone..
As far as dealing with it himself..he gets on the internet mainly for sports and news , listens to his music, watches movies with the kids, talks to the kids, but really does not spend alot of time anymore thinking about the disease..he has grown accustom to being paralyzed...and does not fear the things he used too...he looks at himself more as a quadraplegic...and looks at the main dangers as secondary infections and complications due to that...which most of those are preventable and treatable..it changed the way he felt from being helpless to empowered over his care and his disease..
He is not a slave to the vent..it is a slave to him..he can use it as much or as little as he wants..disconnect if he feels he has endured too much...but for him life is much better right now than it is bad...our family does have to plan ahead make very careful schedules..have back up plans..but we did as well before the vent...Lisa