[tri-med] Re: Newly diagnosed Trisomy 18

----- Original Message -----
From: "Glenn&Sue Hardy"
> >  As I was thinking about this I was wondering how many
> > kiddoes on the list had surgery as newborns?
>
> When Rebecca was born, or should I say after 2 transferes and when they
> decided what was wrong with her.  they did not think she would last threw
> the night........ she has had no surgeries other then the G-tube placed
> under x-ray at 15 mo of age, and then the nissienfundalplycation and
> plyoaplasty at 6 yrs of age, she has had tubes in her ears 3 or 4 times
and
> had her leg set in the OR when she broke her femer at 4 yrs of age

Alex had his first surgery at 4 weeks of age and that was for a strangulated
inguinal hernia (and a circumcision). The hernia fix was an emergency - I
told them that while they were playing down there they may as well do the
circ to. Interestingly our pediatrician now is head of the Australian
No-Circ group LOL. Absolutely no problems with the anaesthetic or pain
following that one.

Next was one week before his first birthday - tonsils, adenoids and
uvulaectomy. Problems with the anaesthetic for this one - he didn't want to
wake up and needed "tickling" - (defibrillating) No-one knows why though I
suspect a combination of a Shapiro's crisis and hypoglycemia both problems
which at that time were undiagnosed.

Then 14 months - gastrostomy, fundoplication and bowel malrotation repair.
Problems post op on this one (hypoglycemia and allergic reactions) was due
solely to idiotic nurses and doctors on the ward who classified mother as a
paranoid neurotic.........

Anaesthetic for an MRI at 18 months (or there abouts)

These three were done before we knew of the trisomy diagnosis. I have since
been told that they wouldn't have been done if they had known.

Then we had vent tubes and an electrocochleography sometime around 2 - 2
1/2. Post op problems due to the nurse not hearing his apnea alarm for 15
minutes when mum went out for coffee at 2am (grrrrr)

Vent tubes removed 12 months later - absolutely no problems. In and out of
theatre within 10 minutes. Mum was ecstatic to have them OUT!!!

Multiple procedures in there with sedation........ no problems other than
allergy reactions to latex.

And his last surgery was for the pacemaker implant. Other than being under
the anaesthetic for an extra 2 hours while they waited for the pacemaker to
arrive at the hospital and a paradoxical reaction to morphine - no
problems......

Ask questions from your heart and you will be answered from the heart.
     -- Omaha Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (6, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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