[tri-med] Re: Sleep apnea

Kelly,
 
  Our daughter Ashton had obstruction sleep apnea at age 2 1/2.   This was 
diagnosed during a trip to the hospital because her O2 sats would  suddenly 
fall 
as soon as she would fall a sleep.  A sleep study was  done.  She obstructed 
over 100 times during the night.  It was the  worst case the pulmonologist had 
ever seen.  She was immediately put  on a vent with a nasal canula.  Since 
her face was so small, none of  the masks would fit her.  We were also told 
that 
due to Ashton's  weight (she was probably 14 lbs?) that she could not have a 
regular CPAP at  home.  Instead we were able to take a vent home with the same 
nasal  canula.
  The tubing ran down each side of her face, she had a  turban of co flex 
keeping the tubes in place, and the canula had to be  placed just right (there 
are tube attached that go inside the nostrils about a  half inch or less.)
  I am very lucky in terms of insurance.  A vent is  extremely expensive.  I 
am told that pretty much every state has some kind  of "law" in place, for 
children who have vents at home, and their parents cannot  afford this 
treatment. 
 As long as you qualify- the treatment is used  to save the child's life- 
then you don't have to pay for it.  In  Idaho, it is called "Katie Beckett's 
(Law?)," in Utah it under a boy's  name.  You should ask the hospital's social 
worker for more information on  this.
  Without this treatment, Ashton would have went into pulmonary  hypertension 
much quicker and would have died!  The vent helped to  hold the hypertension 
until she could have surgery, which was done a couple of  months later.  Her 
large VSD was repaired and an ASD, discovered in  surgery, was also repaired 
with no problems.  The following year, her  tonsils and adenoids were removed. 
  The vent CPAP only lasted less than two years.  Miss  Ashton became quite 
the Houdini, and I spent many a sleepless night trying to  get her to keep her 
contraption on.  Needless to say, she won.  I  spoke to our equipment vendor 
and they provided Ashton with an actual CPAP  machine.  However, that was 2 
years ago, and it is still in  her closet.  A sleep study reveled her 
obstruction 
was down to less  than twenty episodes, that was quite different from one  
hundred!  In the meantime, I keep Ashton on a sat monitor every  night.  The 
only time the alarm goes off, is if she has a lot  of snot.  
  Didn't really mean to give you a whole life history.......but hope  this 
can help you!
 
Raquel Wagner
mom to Ashton Troi (full T18) 6 1/2 years
and to Chevelle Dax (drama queenitis) 14mos
wife to Steve, the Pittsburgh Steelers #1 Fan
SLC, UT  Chapter Chair 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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