[Linux-aus] [Fwd: [Fwd: FW: Leon update]]

[Donna Benjamin <donna@mel8ourne.org>]

-------- Forwarded Message --------
From: Alex Polglaze <apolglaze@book-keepingnetwork.com.au>
To: undisclosed-recipients : ;
Subject: [Fwd: FW: Leon update]
Date: Wed, 15 Mar 2006 07:23:19 +0800

Another promising update.

Alex


On Tuesday 14 March 2006 19:37, you wrote:
> Hi Lucy,
>
> I am being questioned as to what the latest is on Leon so would appreciate
> if you could do an update for me to pass along.
>
> Hope you are okay and coping with everything at the moment.
>
> Love
> Chris

sorry Chris, I have been a little lax!

I can't remember where I have updated you to....

Leon moved up to the ward on friday, and soon after I left stopped any
response to stimuli, voiced or pain etc. so they raced him dowm for a CT
scan, but he was fine. I think myself, that he was just FED UP! You know how
stubborn Leon is, and how he cannot suffer fools gladly, and I think that he
had just had it up to the eyeballs with people asking him to squeeze their
hand, move his foot, poke his tongue out, then shining lights in his eyes
and
taking his temperature and blood pressure hourly...coupled with the
dyspraxia, (where his body, the left side particularly, is not always taking
orders from his nerves, very frustrating for him) and NOT BEING ABLE TO
TALK,
it is a very trying time for him.

He was very depressed, and angry, over the weekend, having difficulty with
movement, speech and his lack of short term memory (he asked where he was,
and why he was there, and what happened to him, and why he had a tube in his
nose, and why I wouldn't let him go to the toilet, over and over again. When
I say "he asked", what I mean is that he mouthed things, and I guessed what
he had said, then repeated it back to him, and he either nodded, shook his
head or made a face (like "what planet are you from?!) in response, so
communication is a long, drawn out process.)

On Monday, the speech pathologist came around and de-cuffed his tracheostomy
tube for about 10 minutes, allowing him to speak aloud...he answered in
monosyllables, obviously finding the sensation of the air going up his
trachea into his mouth and nose again a rather disturbing one, as he couched
a lot, until Jane asked him what the matter was...
His reply was a "genuine Leon" one, something that many of those close to us
would have heard him say as an answer to any problem, which I can share with
anyone who wishes to know, but am a bit embarrassed to print for wider
consumption!

Later that day, on my request, the physio team came and assisted him to sit
on
the side of his bed, one to the front, one to the back, as he had been
trying
hard to sit up and get out of bed to go to the toilet all day...he is NOT
amused at the hospital's arrangements for toileting and bathing! LOL!

When he was seated, he kept listing to port, (that is the left side, isn't
it?) as the left side is a fair bit weaker than the right, and is not
supporting him when he is upright. That side is also more affected by the
dyspraxia, in that he finds it difficult to move his left arm and leg on
demand, although they can move reflexively, like when the nurse was removing
the staples from his head surgery, and his left arm reached up and tried to
grab the forceps from her...

Today, (Tuesday) I read him some of the articles in the Creation Magazine,
we
both were really looking forward to Dr Catchpoole's presentation this week,
I
am hoping that it can be videotaped for us to watch later on?

The physio team measured him for a wheelchair and helmet (he will need to
wear
one 24/7 for the four or so months that it will be before they replace the
piece of skull that they removed. The swelling is going down nicely now, you
can see the edge of the bone remaining) He also sat on the bed edge again
today, and was fasting so that he could have the tracheostomy replaced with
a
smaller one, on the road to having it removed altogether.

He was very chirpy when I got in this morning, laughing and joking (if you
can
imagine laughing without a sound, and joking without words!) with me, we had
a pretty good day, lots of funning around in between all of the
misunderstandings (I have discovered that I am NOT good at lip-reading,
especially when Leon natters on nineteen to the dozen!)

Leon tested positive for some nasty bug on the weekend, (to do with his
pneumonia) and has been orange carded, so care needs to be taken when
visiting him that you do not go and visit any other patient in the hospital
later, to share the germs. Also, you need to wash hands before and after
touching Leon, just to slow down the movement of bacteria which are so
prevalent in a hospital environment.

Some requests....

Please believe that your presence at Leon's bedside is important, he does
know
you are there, even if he may not seem very interested in your company. He
is
embarrassed and uncomfortable with being so disabled at the moment, and
angry
that his body will not obey him, and not very good at falling in under
others' authority! But, he has "told" me afterward about people visiting
him,
so he does remember, even if his short term memory is a bit erratic still.

Please talk to him like you did before, don't be put off by the disabled
looking man you see in bed there, he is so frustrated with all of the
babying
and assumptions that he doesn't know what is going on because he cannot
respond in an adequate way.

Please try not to talk over Leon as if he isn't there, as several of the
staff
have been wont to do, it makes him feel very powerless, and as he does not
have much autonomy at the moment, he needs to have the chance to respond if
he wants to.

Please do tell him funny annecdotes and news about you and the world, and
ask
him questions that he can easily answer with a yes or no, as this will make
it less frustrating for you and him.

Please do assure him that everything is being taken care of with his family,
business and finances. He has been concerned that he cannot help, and is
being a drain on everyone (for instance when my car decided not to start on
saturday, and I had to end up calling the RAC and getting a membership so
that they would start it for me, (and get it out of the pay parking tower!)
on sunday, and take it to the mechanic up the raod to have the starter motor
replaced, and this on the reliable car! I made the mistake of telling
someone
on the phone in Leons' hearing, and he was really concerned)

Please do keep sending emails of appreciation of Leon to me via Jane, Chris
or
Alex, as I am printing them out and reading them to Leon.

...and some thanks:

Thanks so much for all of the support that has been pouring in from so many
people...I never knew just how many wonderful friends we had, how many
hearts
that we hold a place in. I am just so overwhelmed by the love evidenced in:
people taking over Leon's clients; emails; prayers; donations; meals; phone
calls; driving; cleaning; child-minding; cards; SMSs; offers of help;
pampering and care packages; and love poured out for us...I praise God that
He has placed us in this situation, and given Leon a second chance. We could
so easily have lost him due to the initial injury, but God still has a
purpose for him, obviously.

I would like to thank people by name, but won't for fear of accidentally
leaving someone out! I have a few lists in various places of "who, what,
where", so I can show Leon later, and thank you all properly shortly...

Lucy xx



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