[tri-med] Re: Sleep Apnea

Krissy has obstructive apnea. As a 3 months old they determined during a
sleep study that she was stopping breathing something like 100 times an
hour. Other exploring all the options: the nasal trumpet, c-pap (or
bi-pap can't remember which), trach her or do nothing. We decided that
the trach was the best option for her. It has made a world of
difference. She didn't tolerate the other things and we wanted to give
her the best chance she could have. 

The trach has been the best thing ever. She is safe and healthy. Sleeps
well at night. Definitely took some getting used to but care wise is
really not a big deal.

We have explored having her decanulated (trach removed) but even with
tonsils and adnoids removed (adnoids are growing back) her airway is
floppy and there is concern for apnea spells. She doesn't know any
different so the trach stays for now.

We don't use an apnea monitor. Most nights she has a nurse with her -
other nights we simply put her sat monitor on her and turn on the baby
monitor. 

Hard to believe we're getting ready to celebrate our 6th Christmas with
Krissy!

All the best,
Terre
Mom to Kevin - 19, Keith - 16, Kenny - 13, Korey - 11, and 
precious Kristina Rachel (T18) - 5 years - with a smile that
lights up the world!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
terre@xxxxxxxxxxxx <mailto:terre@xxxxxxxxxxxx> 

" There are two ways of spreading light; to be the
candle or the mirror that reflects it."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Jocelyn Knowd
Sent: Thursday, December 22, 2005 2:28 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Sleep Apnea


Tess has been on first CPAP and then BIPAP, both humidified and has 
never had a problem with vomitting on either. Someone else's 
suggestions about obstructions somewhere might be a clue. I'm told 
that some nights Tess just won't tolerate the BIPAP for some reason. 
She also appears to sleep quite soundly and peacefully without it. 
Hope you find a solution to these troublesome problems quickly.

At 03:56 AM 23/12/2005, you wrote:
>Thanks Michelle,
>I will try to keep ya'll updated.  Ya know, last night I kept the darn 
>mask off of her......she sleeps better without it! Sleep apnea and all!

>She does apnea sometimes up to 57 times a minute.......BUT......I 
>noticed that if she sleeps in her comfy ole' position, the one she 
>always did as a baby, she sleeps more sound. Bri arches her 
>back.......head waaaaay back. Last night her arm was
>up/forward onto her pillow and back arched, she looked so peaceful.
Even woke
>up early this a.m. to take baby Kayla to get her RSV shot and go
Christmas
>shopping with Dad and brother.
>.....still sporting lots of epoxy glue in her hair from the sleep
study. Mom
>told her to put on a Santa hat and head on out! LOL
>
>Happy Holidays!
>Laurie
>Proud Mom to Brianna, age 16 w/Trisomy 9p/21 translocation, Brandon, 
>age 13 Marissa, age 7 with Cerebral Palsy and SOD, and new baby Kayla 
>w/Trisomy 21
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG Free Edition.
>Version: 7.1.371 / Virus Database: 267.14.2/208 - Release Date: 
>20/12/2005

Jocelyn, Wife to Frank, Mother to Ian, Gillian and Susan Grandmother
(Nanna)  to Carly 18, Mathew 16, Ashleigh 15, Alex 13 and 
Tess 8 1/2 (T18)
Living at North Richmond, NSW Australia 

                  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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