Tina,
I might as well throw in my two cents. Make the respiratory therapists
spend as much time with you as you need to feel comfortable around a
ventilator. Home health nurses may not necessarly know a ventilator
very well even if they say that they do. Memorize the vent's user
manual and your son's vent settings. You are your son's voice. MAKE
YOUR HEALTH INSURANCE PROVIDE YOU WITH A SPARE VENT IN THE HOME IN CASE
YOUR SON'S VENT FAILS. I use a Bivona trach tube that is very soft and
felxible. This may help prevent discomfort if the tube should rub
against the wall of the trachea (this may also cause problems if the
tube bends too much since your son can't speak). I do not know if
Bivona makes pediatric sizes. I also use rubber suctions catheters as I
find that plastic ones can have sharp ends. Sorry if I am confusing or
scaring you more than you already are. I definatly suggest changing to
a ventilator.
It is really pretty easy to care for someone on a vent. I just thought
that I would give you a few things to think about if you do switch to a
vent.
Eric