[tri-med] Re: pneumonia/intubation/futility?

Very nicely written.

Debbie, mom to Claire (T18)

On 1/26/07, Katy Roberts <basil1_2000@xxxxxxxxxxx> wrote:
> My son has t8 mosaic and because he was 3 months
> premature we spent 6 months in the special baby care
> unit in hospital with him from birth. He was very
> poorly and at 4 months he got pneumonia and had to be
> interbated for the 4th time. The xray showed his lungs
> were 90% full of fluid and the doctors said they
> didn't think he stood much of a chance. We watched as
> they pumped more and more oxygen into his lungs until
> they couldn't put any more in and then they gave him
> intense physio on his lungs. His oxygen sats started
> to slowley rise and they took another xray. Amazingley
> this xray showed only about 40% of his lungs were now
> covered. Over the next 3 days we didn't leave his side
> and he recovered. I tell this story in response to
> your email as I am outraged by this intensivist. My
> son not only had pneumonia but also was very prem
> which meant his lungs were in a very very poor
> condition and he made it through pneumonia and
> ventilation.
> I did have a few moments when some of my sons
> consultants gave up on him, but they never refused
> treatment. Infact they became clouded by his trisomy
> when they baffled as to why he was so ill and wanted
> to give some treatments that could cause further brain
> damage thinking they had no other option. My husband
> and I had to argue medical points and thankgod they
> never gave him  the drugs. I am sure we all have our
> dark day stories but what I am saying is who do these
> guys think they are? My son has proved them all wrong
> with his strength and determination. We had a sad but
> famous case in Britain over the last few years about a
> baby called Charlotte born with T18 and had multiple
> medical issues and the doctors went to court to win
> the right to not intervene or ventilate if she should
> die. This was against the parents wishes. The doctors
> won. Charlotte went on to live and she is now about
> 2-3 years old. She defied the doctors and the courts
> lifted their desision. The sad side to this story is
> the parents split up and  because the mum was now
> looking after all the other kids she couldn;t bring
> Charlotte home from hospital and she was put up for
> fostering and of course with all her special needs
> this was a very difficult task and I think she is
> still living in the hospital. But the point is
> Charlotte defied the odds against her and survived. It
> really peeves me off that it is not just a childs well
> being being looked at but the financial 'drain' on
> society they are perceived to be.
> I spent 6 months with my son in a special baby care
> unit and I witnessed very sad things but I also
> witnessed miracles and I don't think any person has
> the right to give up on a human being that is fighting
> for life.
>
> Standing off soap box now.
>
> Katy.
> --- Barbara Farlow <b_farlow@xxxxxxxxxxx> wrote:
>
> > I was speaking to an pediatric intensivist at one of
> > the best Children's hospitals in the country.
> >
> > He said that he would not  intubate a trisomy 13/18
> > child with pneumonia because he would consider it to
> > be medically futile.
> >
> > I think this is a very significant statement and one
> > of great concern. If this is what most intensivists
> > believe, parents should know it.
> >
> >
> >
> > Does anyone have a tri13/18 child who was  intubated
> > for pneumonia and recovered and if so, at which
> > hospital did it occur?
> >
> >
> >
> > Thanks,
> >
> > Barbara  mom to Annie 05/25/05-08/12/05
> >
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Sleep is for Pansies.

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