[tri-wings] Re: What a choice! (long)

Hello Sharon,
First I want to let you know. I think it is great that you told the "Dr." how 
you felt and no your child's health is not amusing. I know decision making is 
tough, but the one recommendation I have right off the back is, get as many 
different opinions as you need, not only from Drs. but from nurses!, who are 
also moms and possibly people who've been through it, friends and family that 
are close to Jamie and you and others. until you feel in your heart you have 
exhausted all your options, then follow your mothers sense. You may be 
wondering what I am thinking. Not really knowing much about Jamie, it is hard 
for me to give a definite opinion but from reading the e-mail, in my heart I 
think if it was my child I would go with the Angioplasty, but it is your heart 
that will tell you what to do and that's all that matters. And whatever 
decision you will make you will make out of love to your child.
Thinking of you
Carmen

----- Original Message -----
From: Sharon
Sent: Saturday, May 24, 2003 7:10 AM
To: tri-wings@xxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx
Subject: [tri-wings] What a choice! (long)
  
Hi

We're back.  It's not been the best week but we made it.  Jamie's consultant 
was off sick (isn't that just typical) and so we were seen by another Dr, who 
clearly didn't know his backside from his elbow.  He couldn't understand why we 
were there, said that the echo and ECG results were the same as last year and 
that Jamie was a picture of health!  Right (sarcasm meant here)!  Anyway, he 
thought that all this was amusing and thought it appropriate to keep smiling 
and smirking, until I told him that him thinking this was funny was not and to 
find us someone who knew their job.  As always, they get a shock when they 
realise I'm a nurse (albeit a student) and usually their attitudes change, 
which his did.  He then contacted a registrar who looked at the results and the 
notes and agreed with us that there was, or had been, a problem.  So it was 
agreed that a blood test should be taken to see if there were any underlying 
infections that weren't picked up. If so, that would mean abo
ut 6 weeks in the hospital for Jamie linked to a drip of antibiotics.  It would 
seem, however, that Jamie may have had an infection at one time that went 
undetected and he worsened when he developed that ear infection last week, 
which was something else his body and heart had to cope with.  But after having 
anti-biotics for that, that may have been all he needed.  He seems to have a 
improved somewhat since although he still gets tired easily sometimes and goes 
rather pale and/or blue.

After the blood test was taken, it was agreed that we should return back to my 
parents' home (who live near Birmingham) and wait till the morning for the test 
results.  Within 2 hours of the test being taken, the results were back and 
John was contacted.  Thankfully, the tests were negative!  We were told that 
Jamie's consultant would contact us the following day, as he was due back from 
sick leave, after he had conferred with his colleagues and read Jamie's notes.

When Jamie's consultant contacted me the following afternoon, I wasn't prepared 
for what he would tell me (none of us were).  He agreed that whilst there was a 
slight but significant change in Jamie's echo and ECG results, no urgent action 
needed to be taken....BUT....Jamie does need an operation.  We were left with a 
choice of either Angioplasty (which I told you all about before we left) or to 
have a mechanical valve fitted in place of the damaged valve.  What a choice!  
Apparently, both are as good as one another, therefore as the consultant said, 
if one was better than the other, we wouldn't have been given a choice!  Both 
come with risks (don't all ops?!).  We wanted to be able to meet with the 
consultant but he is an extremely busy man and couldn't fit us in in the near 
future.  After talking it through with John and my parents, John and I have 
agreed that the angioplasty is the best way forward, but at the advice of the 
consultant's secretary, we are to send a letter w
ith all the questions that we need answering and the consultant will reply back 
or call us.  We have surfed the net regarding the mechanical valve and we have 
so many questions that we need to answer but are afraid to hear, but the same 
can be said of the angioplasty.  I don't know if we've made the right choice 
here with going to the angioplasty, but we do know that we can change our minds 
and we have agreed to wait until we receive a reply to our questions before we 
do so, if at all.

John and I feel this is so unfair to leave us with such a choice for Jamie.  
What happens if we get it wrong?  I wish the consultant had said 'I think this 
is the way to go..........' but he didn't.  Like I said, we'll wait until we 
get a reply back and take it from there.

I wanted to say thanks to you for the genuine thoughts and wishes to us. It's 
been a stressful few weeks and it's not set to ease for quite a while.  Any 
thoughts or advice from any of you who have T18ers with heart problems would be 
sooooooooo gratefully received.
Thanks again.
Sharon

'No parent should have to bury their child'
King Theoden - Lord of the Rings: The Two Towers 2002

For Emily (T18) 25th February 1996
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