I have been paralyzed from the neck down and dependent on a vent to breathe
for 8 years now since I was 21. I'll try to answer some of your questions.
At 06:39 PM 8/3/97 -0400, CGawlak(AT)aol.com wrote:
>She is conscious but not very responsive. The last couple months we've seen
>a decrease in her responsiveness. She suffered from depression before this
>illness and was on medication, but medication she received for a while during
>this illness seemed to have no effect so she was taken off of it. She used
>to nod or shake her head 'yes' or 'no' but now rarely even does that. We
>communicate with her by asking her to stick out her tongue for 'yes'.
When I was first in the hospital I was unable to speak due to the cuffed
trach. I would make a clicking noise by moving my tougue against my teeth
to get people's attention. Someone made a board with 4 rows of the alphabet
that we would use so I could spell out words. Someone would point to
letters until I made a noise that that was the letter I wanted. It worked
pretty well.
>The situation is furthur complicated by the fact that my parents are in NJ,
>I'm in Fla., and my brother is in Massachusetts. I visited VenCor in
>Philadelphia but didn't like it. I found a facility in NJ that is good but
>there is a waiting list (last female bed was available 6 months ago). The
>closest vent facility to me in Fla. is 120 miles away. I don't see how we
>could care for her at one of our homes due to the high level of medical care
>that she requires.
Her insurance might cover home nursing. I live at home with my mother and
brother. When I first came home my insurance paid for 24hr nursing. I'm now
on Medicare/Medicaid and get 80hrs/week and my family does the rest of the
time.
>Some things that I'd like to know that come to mind now are:
>What does the vent feel like?
It doesn't really feel like anything. Sometimes the trach moves and rubs
the side of the tracha and that's uncomforable, otherwise you don't really
feel it's there.
>What is involved to set up a unit at a home? To maintain the unit?
Ideally you should have 2 vents, one bedside and one on the wheelchair.
There's not much to maintain, the tubes just need to be cleaned twice a week.
>My mother CAN swallow (we feed her water ice, jello) but is on a feedling
>tube. How do you eat with the trache?
I have no trouble eating anything (steak, hamburger, pizza, whatever).
>Has anyone used VisionKey (made in Canada)?
I haven't used it. Just looked at the web page and it looks pretty
interesting. I use sip and puff to type morse code for computer input.
>Did anyone have any experiences with the medical community where they wanted
>to "pull the plug" on you?
No that never happend to me.
----
Jim Lubin jlubin(AT)eskimo.com
Bothell, WA, USA <http://www.eskimo.com/~jlubin>
disAbility Resources: <http://www.eskimo.com/~jlubin/disabled>
World Wide Pager: <http://wwp.mirabilis.com/1524784>