[tri-med] Re: [tri-family] Re: Savannah Update

Original Message -----
From: Karen Schuler <karens@xxxxxxxxxxxxxxxx>
Subject: [tri-family] Re: Savannah Update


>
> ----- Original Message -----
> Alex does this post surgery as well. The doctors assure me that its not
> uncommon for people to spike a fever after surgery and its only if it
> persists that it becomes a real concern. When it persists I believe that
its
> called malignant hyperthermia....... Alex's temp usually comes back to
> normal within 12 - 24 hours.
>
> I agree though that I would expect our tri-ers to have this problem and
for
> it to be more "extreme" given their known problems with temperature
control.

Hi Darcy...Everyone!
First of all..let me say that I'm happy that you have Savannah back although
I know it must be hard having been all ready for this surgery...only to be
told she can't have it right now :o( But I'm tickled to death that she did
well for her cathing procedure and that she's still a candidate for future
surgery for her heart :o)

Just to put my two cents in...Devon developed a fever after his cleft
repair...if I remember correctly it got to 102-103. Because of his T13
diagnosis they were very cautious and concerned. To be honest,  we were
too...he was only 9 months old and it was his first surgery. Having been
told that surgery is riskier for our triers....we expected trouble but were
hoping it would pass us by. They kept him/us in recovery for like 5-6 hours
while they did test for malignant hypothermia and just basically watched him
like a hawk and of course gave him Motrin or Tylenol. It ended up going away
with a dose of medicine and it didn't go back up. Aside from having to camp
out in recovery for so long it turned out fine. I should also mention that
Devon had morphine (post operative) for the pain...with a heart monitor on
him at my insistance. What followed was one of the worst nights in Devon's
history :o( He startled awake like every 10-15 minutes ALL night long. I had
a major meltdown around 3-4 AM having had no sleep for the night before
because of my nerves. I just wilted to the floor by his crib and sobbed
uncontrollably...albeit as quietly as possibly :o) The nurses saw it coming
and called my husband at the motel (he has a severe back problem and could
not sleep on the hospital room floor or chair). Joe got to the room and with
him there to comfort Devon when he startled awake...crying/mewing like a
weak kitten...I was able to doze a little knowing he would take care of our
baby boy. Now...my dad has a history of hallucinating when given morphine
after his many surgeries...I truly believe that that was what was happening
with Devon too. From then on he had Tylenol with codiene for a day or 2
after we got him home and then motrin. After his abdominal surgeries we
requested Demerol...he/we LOVED Demerol :o) Charleen (Ashley's gramma on
this listserv) was with us when he had his last surgery...she can attest to
Devon's blissful comfort in recovery. I swear the boy didn't even flutter an
eyelash...he was sleeping so peacefully and painfree!!!! The nurses finally
had us wake him to make sure he  would be able to take nourishment without
vomiting. He was a little crabby because he would have preferred to stay
asleep ...but other than that he was fine as frog hair that same afternoon
when we got him home!!! A person would not have been able to tell he'd had
abdominal surgery and had a 2 1/2" long incision below his diaperline...and
severe bruising in his scrotum...although it made big brother Nick and us
cringe everytime we changed him :o( I think the only slightly worrisome
thing for us was waiting for his kidneys and bladder to "wake back up" after
the caudal block he was given  for the surgery. He had a dry diaper for
about 13-14 hours after the surgery...but then everything woke up and worked
fine :O) He only had ther post operative fever that one time but it is in
his record so they watch him closely afterwards :o) FINE with us!!!!
Love,
Penny...devoted wife to Joe and "Mom" to Nick (10 yrs...lover of Pokemon,
Legos, Pizza and chocolate icecream) and "Mommy" to Devon (AKA-Stinky
Boy...Lover of Bear, Stuart Little, Barney, Blue, Rolie Polie Olie, Pooh and
Co. and food in general, 5 1/2 years old!!! Full Trisomy 13 w/balanced
translocation 5 and 13)...Brat and KC (the feline children)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!)
And last but not least, check out the homepage I made!
http://www.geocities.com/Heartland/Shores/1963/index.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

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

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