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Posted by melonie --Previous Message-- hi debbie, Thanks for listening and good luck to you and your son!! :
on 10/22/2005, 6:40 pm, in reply to "Re: when is enough, enough????"
144.138.57.140
: My son at your sons' age actually had
: to use lweg splints(AFos) to walk
: for a good few years due to the
: foot, leg and knee probs he has, the
: toes was just an added insult!My son
: STILL walks inwards and his toes are
: now straight in fact last week we
: learned that owing to worsening of
: his scoliosis he now needs to wear
: foot splints to help with
: realignmnet, if he doesn't he will
: end up needing a knee and hip
: replacement in the future..that was
: a shock I can tell you...My son
: nearly died after his pharngoplasty,
: resuscitation, adrenaline the lot
: but that was due to severe issues
: with his airways so I am naturally
: hesitant about any surgery!I thought
: open heart at 3 months was bad but
: that was hellish...I dread any
: future necessary surgeries..I too
: remember some of his toes curling
: under each other and the little
: silicone toe straightners really
: helped with that! It is so difficult
: to 'know' what to do for the best
: isn't it?? I say go with your gut,
: what is right for me is not
: necessarily right for another mum!
: Debbie
thanks again for your information, well between you and me my gut says no, not yet anyways, it has only been 21 days since the pharyngoplasty....but my family seem to think that after these 2 operations he will be magically fixed, and be ok forever!!!!!I understand what your saying about your son, and beleive me if i had been through heart surgery, once that was fixed i dont think i would let any one near my son. You see i have developed ths problem that i dont trust doctors, only my doctors and only the specialists that we see regularly, we ended up in emergency in a smaller hospital than where he had the pharyngoplasty the same day he was released because he started spitting up stitches, they put him on a drip, collapsed his vein, and made us wait hours to see an ENT. Well i demanded to see my ENT but they wouldnt contact him on a Sunday so we were stuck with a registrar, she didnt look any older than me(24) and i told her i would prefer if she didnt touch my son and she got really stroppy and told me that soft palate operations isnt as bad a bone reconstructions! Well that may be so but it doesnt lessen the degree of the worry of the parents, these doctors think they know everything!!!!!!! But what they need to realise is that if they dont have a child going through it they shouldnt judge.... I felt i couldnt have been treated worse that night, DO WE HAVE A SAY????
I am rambling maybe i need to explain to my doctors that i buried my nephew\only godson, on august 17th this year.... My 17 year old sister in law went into labour at 28weeks and was sent home with tablets for abdominal pain.. The next morning i got the job of driving her
1\2 hour to the next hospital but she was too far gone and i called her an ambulance, we only just got to the hospital and her waters broke, she was rushed for a ceaser. The baby was on life support for 9hrs before he passed.
So only recently have i had a huge reality check.
Sorry to pour my heart out and i understand that Connors problems are mild compared to some of the kids with this syndrome but i do believe we all still worry just the same, but at different times..
It is sunday morning and tomorrow is the day, i will let you know how i go, i am going to have frank discussion with the aneathasits?? and the surgeon and i think ill probably end up saying no!
Melonie
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