[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

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