[tri-med] Re: Luke Update

----- Original Message ----- 
From: "Kraig Warnemuende"
> One thing I've wondered, too, due to lack of information, is why Luke's
> had to be in the hospital for nine months.

Its a fair question Loren and the answer lies in the different type of 
health system.

In the UK, and also in Australia the existence of home nursing is almost 
non-existent and nursing staff (and medico's) are far more territorial.

If I am reading the actual judgement correctly not just what was reported in 
the media (and I dont have a copy of the FULL judgement yet just bits and 
pieces) the primary reason that Luke was still in hospital was the ng tube.

Its not so bad here but 9 years ago when Alex was born it was. NG tubes are 
supposed to be temporary and should be replaced frequently and frequently 
come out.

In the UK and in Australia a parent cannot replace an NG tube themselves. It 
must be done by a nurse or doctor. Once upon a time not too long ago we 
could not even get a community nurse to replace the ng tube. Its laxed up a 
little here and you would be able to come home with an ng tube IF the 
community nurses agreed to changing it AND if you werent too far from a 
hospital if it needed changing outside of routine visits. Community nurses 
can only come 3 times a week at set times. If you are a country family 
forget it - you stay in hospital simply because of the ng tube.

It was the ng tube that caused this whole debacle. The first hospital 
eventually dropped the initial court case. It was Ruth's desire to bring 
Luke home that her keep on asking for a PEG. What she thought was happening 
is that hospital number 1 was transferring Luke to hospital no2 to get the 
PEG so he could come home.

But hospital number 2 said no to the PEG and went to court claiming that if 
Luke was anaethetised he may require ventilation. Hence the court case. and 
my belief that Ruth was set up.

I know that when I learnt those details of the case I sent a few articles to 
Ruth's solicitors that that wasnt necessarily the case. Our kids do just 
fine in most cases with the anaesthetics.

Anyway the ultimate judgement seems to have said that no Luke could not go 
on a ventilator, but the judge did say very specifically that the hospital 
were to work with Ruth on developing a feeding regime based on Luke's 
assumed LONG TERM survival so that she could bring Luke home. Thats why I 
think it was the NG tube that was preventing that.

Here in Australia we dont get to bring kids home if they are highly 
dependent, whereas you guys in the US do. There are kids in our hospitals 
who are vented and have never left the hospital in their entire lives. I 
know one little boy who is now 14 and he is STILL in hospital though they 
were able to set him up on a ward instead of the PICU. When I first met him 
he was 4 years old and still in the PICU.

Its starting to change - but its a slow change. We do have a couple of kids 
at home on ventilators now but only where there are insurance companies 
picking up the tab for the nursing care. Private insurance doesnt cover it 
and neither will the government.

It really is the difference between private health coverage and public 
health and it boils down to $$$ every time. Remember 12 months ago when I 
fought the health department here over having O2 cylinders in the house. My 
local hospital was trying to get Alex admitted back into hospital every 
night rather than spend $300 a year on O2 cylinders. I had to write to the 
minister and point out the utter STUPIDITY in paying for a hospital bed 
every night as opposed to a silly O2 cylinder. (and you arent supposed to be 
able to get the O2 cylinders privately) The system is mad and its often a 
case of "so long as you arent asking for anything out of my budget I don't 
care" Common sense doesnt exist.

The length of a hospital stay in this country are MUCH higher than in the 
US. I remember when I did a stint in the spinal unit that the average stay 
in the hospital after a broken neck was over 9 months. Yet in the US you 
would be home within a week or two - as soon as the fracture was 
stabilised.Different ways of thinking and approaching things between the 
health systems

"It is not how much we do, but how much love we put in the doing. It is not 
how much we give, but how much love we put in the giving."
 ~ ~ Mother Teresa ~ ~

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens
 

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

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