[tri-med] Re: Luke Update

Wow, what a difference!  When we went home from NICU with Elanor they showed 
us how to insert the ng tube, had us each do it once (poor Elanor), then 
sent us on our way!  When she went home with a trach and vent, we had 
nursing most of the time, but our nursing dwindled down to nothing (people 
just stopped showing and they couldn't get replacements--don't get me 
started on that!) and we were alone a lot of the time with the vent.  We did 
feel like we were unqualified at first, but pretty soon we were teaching 
some of the nurses what to do!  I can't even imagine being in the hospital 
with Elanor for months, never mind 14 years!  Wow.

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, October 23, 2004 9:44 PM
Subject: [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
> 

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

Other related posts: