How did they start the weaning process, I got up
to 4hrs off the vent when I first got home then I went to see about having the
probs installed. They said I wasn't a candidate so I quit trying to
wean.
Sorry this took me so long to respond, but I lost my Internet service for
several days.
Yes I was on a ventilator for just over four months. The weaning process
started once I arrived at the Tampa VA and I give 80% of the credit to the
outstanding respiratory staff at the hospital. If it was not for them I
would still be on a ventilator. No I do not do my own transfers and
therefore I do require assistance daily. No I do not need to be suctioned
anymore. After weaning, they left the trachea tube in my throat for just
about one month longer, waiting until my secretions diminished to the point
where they could finally removed the tube. Now if I have secretions I need
to do quad coughs, but hopefully that does not occur very often. As for my
daily requirements: I usually have someone come in the late morning and give
me up. They perform all of my daily rituals and make sure I have everything
set up and give me lunch. My mother or father usually come over at dinner,
but not always. I then have someone who arrives very late at night and puts
me to bed, once again! setting everything up so I have control. I have an
ECU which operates my equipment and telephone and I additionally have a
rotating mattress. I have been able to set up a makeshift method to take my
medication, so I don't need anybody in the very early morning. Obviously I
am my maintenance, but it is important for me to be a self-sufficient as
humanly possible.
Billy
Silas Shelburne
<[EMAIL PROTECTED]> wrote:
Hey Billy,
Were you ever on a vent? If so how
did you wean yourself, if I could get off this frigging vent I could do
so much more. Surly you don't do your own transfers, do you have
help every day? Ill get around to sending the pictures of my chair
and cell phone. Have a good evening. Silas
I am a C2-3 quadriplegic that is not ventilator depended. I have
managed to live at home alone for the last year and a half, but this
was something I had to develop over a time. I also have an extensive
support system, which many other people are not able to get. There is
no way I would have been able to accomplish this earlier due to
complications with catheters kinking, needing additional water, and
general anxiety. I have had frequent problems with my catheter
plugging and thus have had to call for help in the middle of the
night. What I typically do is assess each problem which I have and
then determine what course of action I will take to rectify this
difficulty. If it is something that I need to have done, but is not an
absolute emergency then I'll call a member of my family, depending on
which one is available. If it is an emergency I feel can be rectified
easily and one of my neighbors can handle it, I will call in a friend
and have them handle the situation for m! ! e. Obviously all
emergencies which cannot be handle quickly I need to call 911. The
closest family members I have are approximately 20 minutes away, but
my well-trained family members are about 20 to 25 minutes away.
Establishing a network of this type requires getting out and making
great friendships in addition to maintaining these friendships. Not
all people are able to do this due to an array of different reasons,
i.e. they live in a rural area, their neighbors are not very friendly,
ect.
I got the idea to do this by reading an article about a
quadriplegic that is roughly the same functional level is me -- C4,
but still does not have any movement of the arms or legs -- who was
living by himself in St. Petersburg. I wrote to him and ask him
questions, but didn't receive all the answers I thought I needed. I
did discover how to take medication, but a requires access to an
environmental control unit which can control your bed. I gradually
discovered how to handle most of the problems I run into and vowed to
try it for a little while. I figured if I was only able to handle it
most of the time, I could still get someone to move in with me and I
might be able to lessen their load and thereby find a more suitable
live-in companion. There are situations which can be absolutely
petrifying, but I have put some of these fears behind me. I did have
one situation which arose one time when my brother happened to be in
the house. Lightning had struck close by and had loc! ! ked up
telephone. We only discovered this when we had to call 911 due to
excessive bleeding from the rectum. In all honesty I would have died
if my brother had not been present. Will the situation recur, I
sincerely hope not. If I do not feel well, I require a member of my
family to stay over with me to make sure nothing goes wrong. I am
hopeful that I will be able to maintain my health so that I am not
forced to have my family stay with me frequently. I am trying to find
a voice-activated cellphone which will give me the ability to call for
help if I lose control of my sip-n-puff or the telephone locks up. I
have not been able to get complete control of a cellphone yet and
still have that problem, but I am hopeful I will be of two rectify the
situation in the near future.
I hope this answers a few questions, but remember nobody situation
is exactly the same. It took me over 8 1/2 years to develop the
ability to do this and there are many others on this list and around
the world that probably would not if given the choice. I am still
hopeful my ex-wife will decide to remain in the United States
permanently thereby giving me a live-in companion. FYI, we only
divorced because my wife determined and wanted to remain in Germany
following my accident. It is a long story, but we are still amicable
and in fact she usually visits at least once a year, if not more.
Billy
Please excuse any errors. I am using voice-activated software and
it occasionally makes mistakes which I do not always
catch.
Greg <[EMAIL PROTECTED]>
wrote:
I recall reading that some of you guys
are home alone at night while in bed. After last night, I know I
could never feel safe dioing that.
I started an antibotic and last night
and it made me sick. Plus all those nights I wakeup sweating cause
my cath is twisted shut or something.
I would go into a mini panic attack if
these happened and no one was here to help.
