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PostPosted: Sun Nov 16, 2008 10:00 pm 
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Location: Australia
I had been told something similar when my young boy required eye surgery. Almost went blind at 2 months of age. So they operated and it was a success. But he needs pressure tests for the rest of his life as preventative treatment.

Well, at young ages they put them under a general for this test as you need to stay still. All is well up until 3 years of age.... then my boy realises he doesn't like to go in for the test anymore and I am told 'We can't do the test under a general unless he co operates and is wanting it.'

My thought was.... he is 3, I am making the decisions. But no, apparently that is standard hospital procedure. Patient must agree. So 1 year later we now don't have those tests done under general, as he refuses.... kicks, punches yells.... and I have worked with the specialist on a new treatment where it is done while awake and this new style of testing doesn't require him to have to stay still (as he stills argues the point). Well my boy with his special needs can be a pain for a mothers head. :)

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PostPosted: Sun Nov 16, 2008 10:49 pm 
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Every child has quirks! Just as soon as they get out of the "terrible twos", there comes the "defiant threes," and so it goes, all through life. Since yours has some special needs, no doubt you have to have tremendous patience, m3_shall. It can't be easy... Keep your chin up.

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PostPosted: Sun Nov 16, 2008 11:10 pm 
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Yes.... I will keep my chin up... thanks.

If I had a 13 year old child refusing a heart transplant... which would end their life... I'd be devasted. I think the decision for surgery should have ended up with her parents. As the child's emotions were clouding her judgement and at the end of the day the parents were legal guardians until she was 16 years of age. Some of these hospital procedures are ridiculous.


I think what I am trying to also say is that it takes a strong person to accept their fate of death... but I say this comment with the thoughts of my nanna....

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PostPosted: Mon Nov 17, 2008 12:07 am 
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This child has been forced to undergo chemotherapy, and been on other medications, since the age of 5. Every drug has side affects, and the chemo, combined with some of the others, weakened her heart, and (no doubt) other organs, as well.

Now she's was being asked to go through a surgery from which she might not survive, and if she does, then there's the painful healing time, combined with another myriad of anti-rejection drugs, with even more side-affects.

http://www.mayoclinic.org/specialty-pharmacy/organ-transplants.html

If you have never had open heart surgery, you can never really know what healing from that is like... We nursed a good friend who has no family, while he recovered from having his chest cracked open, and then stapled back up with drainage tubes, severe pain, feelings of suicide; it took Henry 6 full weeks before all of the drainage tubes could be removed, and the constipation he suffered from the pain killers he had to take along with antibiotics, etc. was psychologically traumatizing for us to watch. And yet I still have no true idea of what Henry endured because it was his body, not mine, that was going through it.

If you went to the above link and looked at the anti-rejection drugs and their probable side-affects, you can tell that taking these drugs for the rest of her life will wreak havoc on her already damaged organs, plus create new aggravations and more limitations. So while the heart transplant may give her a few more years, she probably is a smart child--one who has had access to the internet, and can read for herself what she will probably face, for as many years as she remains alive. Perhaps she has simply had enough... enough drugs, enough side-affects, enough doctors, enough pain, and just wants to be left to live for as long as she has left, without adding more pain and misery to her plight.

No matter how old and wise each of us thinks we are, we can't walk a mile in that child's shoes.

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PostPosted: Mon Nov 17, 2008 12:20 am 
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I think that it is in part at least, because of her age, that she has a much greater expectation of recovery and living a long life.

I would never criticize any adult for making such a decision. They have a legal right to their own decisions. There are few of us that have remained unaffected by a friend or family member that has seen the devastation of the treatment and drug interractions as you described them Tweaked. It can be horrible; there are risks with any treatment, decisions whether or not to risk the consequences of the 'cure' can be worse than the illness itself.

All I can say is I hope that this child changes her mind.

Tim

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PostPosted: Mon Nov 17, 2008 5:14 am 
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You know your stuff Tim, yes, 13 year olds certainly do think they know all the answers.

I think girls more than boys, at least that has been my experience as a parent.

Yes, there is something wrong in the burbs, if they say sure, go ahead and die its your life.

Any half balanced person would be seeking anything in the way of an alternative to death for their child no matter what it took. Lose the house, lose the car, lose your job etc., you would go the limit if you really cared.

I think even strangers would be wanting to help.

But who knows, maybe these parents think this is really cool, very modern and hip.

No thanks, our little girl wants to die and we respect her wishes, all she wants for Christmas is to die........good grief this is sick.


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