[tri-med] Battle Armour

I guess that I was somewhat delusional in thinking that things had settled
down over here and that we could now just sit back and enjoy things........
definitely delusional I know, this is after all the trisomy roller coaster.

Having gone through the motions with regards to Alex's oxygen we have now
reached the point where the armour is on and I am gearing for a major fight.
I hate this!!!!

As you all know a few years ago - actually March 2000 the kids hospital here
finally gave in, after a 4 year battle, and "allowed" me the right to
resuscitate Alex despite the T-18. It reached boiling point when they
refused to accept him into ICU following a cardiac arrest. Part of that
concession was allowing me to have oxygen plus airway, ambu bag etc in the
house for resuscitation. Huge weight off my mind and we have needed to use
it a few a times.

Last year they changed the system. The Kids Hospital could no longer supply
the oxygen etc - I had to apply through our local hospital. Welllllll seems
that our local hospital feels that guidelines are rock solid, written in
iron rules - not GUIDElines. And they have refused to allow us the oxygen
saying that they do not provide oxygen cylinders (I can have a condenser)
because of budgetary constraints and because I needed blood gases and a
recommendation from a respiratory person or cardiology.

I pointed out that blood gases when he is dead are a bit late, and that this
has nothing to do with respiratory or cardiology - its an ICU / neurology
decision.

After one screaming match they decided, very magnaminously to accept a
prescription from his pediatrician for consideration. Duly done and sent
(excellent letter by the way).

Yesterday the ruling came down that no they would not supply and that to get
it I needed ministerial approval. Talk about red rag to a bull!!!!!!!!!!!

So beware - the fight is on. Letters were sent to the Minister for Health,
the Shadow Minister for Health and the complaints person for our area health
last night. They have until Monday to respond (positively) before I go to
the media. Short time frames because this is life and death, even though I
know ministerials usually take a lot longer. I have enough oxygen for the
moment, but one major crisis and its gone. That could be tomorrow - it could
be 6 months away but I am not taking chances with my sons life. The Kids
Hospital are most definitely NOT getting their cylinders back until I can
replace them.

The battle lines are drawn, and I am ready - stay tumed for updates :-))

"Write injuries in sand, kindnesses in marble."
- French Proverb -

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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