[tri-med] Re: Cleft Palate Repair...

We just went to the sleep specialist and he read the sleep study notes
which said that it was her tongue blocking the airway.  It makes sense,
because when she sleeps, she is soooo relaxed, and she tends to breathe
more shallowly.  Right now c-pap is going ok, and we will probably go
see her ent soon.  We never had the camera thing done, but things are
going well at this point, so if it ain't broke, don't fix it!  But who
knows what is going to happen next?!

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Karen
Sent: Monday, June 28, 2004 1:59 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Cleft Palate Repair...

----- Original Message ----- 
From: "Jennifer Vanderbeek"
>> I guess her tongue is
> pretty large and causes obstructions even without the palate.

Have they determined that her tongue is what is causing the obstruction?
With Alex the primary causes of obstruction were lower down and higher
up
than the palate. That is he had an LBO (basically a camera that goes
down
through the nose and into the lungs to see exactly what points of
obstruction are there) which showed that he had severe broncho-tracheal
malacia, plus he had an artery impinging on the trachea which was
causing
obstruction, and to a lesser degree choanal stenosis.

When they operated to try and help solve the obstructions to improve his
breathing they worked on the palate (tonsils, adenoids, removing the
uvula
and shortening the soft palate because that was easier than rerouting an
artery, stenting the choanae or dealing with the malacia. It certainly
helped make the obstructive apneas less of a problem but didn't cure
them
totally, but we knew that it wouldn't because they werent treating the
actual obstructions. (hope that makes sense)

The malacia did improve with time as he got stronger and bigger but he
still
has a stridor and really bad sats at times. Sometimes, like now, when we
are
dealing with progressively lowering sats I wonder if we should have gone
with opening the choanae more. It would have been an ordeal when he was
a
baby - it would be a nightmare now that he is older. Still if we do end
up
in for more surgery for his heart and stomach I may ask the plastic
surgeon
what he thinks about repairing the cleft and opening the choanae
permanently
while we are at it.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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

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