[tri-med] Re: sleep apnea in Tri-18 babies

Our Mitchell also has sleep apnea. His is central and was obstructive, but
like Kristina, he was trached. It wasn't  a hard decision after we watched
the video of the bronch that was done, Mitchell's trachea was collapsing and
obstructing about 90% of his airway! We saw that and said-how soon can we
get it in. Now, he still has apnea here and there, but it is central. He
came home with CPAP after he was trached. It isn't a typical CPAP machine,
it is an air compressor hooked up to a heater and then he uses what is
called a cardens valve that hooks up to his trach. He was on this 24 hours a
day for a long time. Now he is on it at night and we are trying to get him
off of it totally. He was 5 months old when he was trached and came home at
about 6 months. 
Good luck--I will keep your family in my prayers.
Katie Mom to Mitchell t13 mosaic
Www.caringbridge.org/mn/mitchelljohncragg


On 8/27/06 10:40 PM, "Terre Krotzer" <terrek@xxxxxxxxxxx> wrote:

> Hi Kelly:
> 
> My daughter Krissy had sleep apnea. When she was 3 months old we
> tried her on a cpap machine. They told us the same thing, that it
> was not approved for home use for infants. There was no way I was
> not going to have Krissy home with me. I can't even imagine that.
> I believe there are folks on this list that have kids that
> used/use a cpap but I'm not sure how young they were put on it.
> 
> With Krissy she simply wouldn't tolerate the cpap so we made a
> decision to have her trached. It was the best decision ever -
> hard to believe now that at the time it was a difficult decision.
> Today she is 6 years old, happy, healthy and the Princess of the
> House!
> 
> She is still trached because her airway is still a bit floppy. We
> aren't willing to try decanulating her (having the trach removed)
> because with the trach she is safe and healthy. It really is not
> a big deal caring for the trach and she doesn't know any
> different.
> 
> All the best,
> Terre
> =20
> Mom to Kevin - 20, Keith - 17, Kenny - 13, Korey - 12, and
> precious
> Kristina Rachel (T18) - 6 years - with a smile that lights up the
> world!
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> Terre Krotzer
> terre@xxxxxxxxxxxx
> =20
> " There are two ways of spreading light; to be the candle or the
> mirror that reflects it."=20
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> Show your family how much you care...
> Get your Will and Living Will in place today...=20
> www.krotzers.com
> 
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 


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

Other related posts: