[tri-med] Re: Having difficulty getting baby to accept CPAP

May:

My daughter Krissy, age 9 full t-18 was diagnosed with
obstructive apnea at the age of 3 months. We became aware of how
severe it was when she got her first cold and couldn't breathe.

She was hospitalized while we explored options. Without going
through the whole long story, we tried several options, CPAP
being one of them. Like Vera, Krissy simply didn't tolerate it.
Also, at the time they told us that there were no CPAP systems
for home use which meant a long term hospital or care facility.
No way was that going to happen. Didn't matter because Krissy
wasn't having any of it!

Our option was to trach Krissy. I will tell you, although I know
others see it as a negative, it was absolutely the very best
thing we could have done for Krissy. The trach has kept her
breathing safe. She sleeps well and soundly because she has no
apnea episodes. The care is really very simple. Took some getting
used to, but no more than the rest of the adjustments we make as
parents of a special needs child.

 I believe that she is strong and healthy today because of the
trach. 

Good luck to you in your search for answers.

All the best,
Terre
 
Mom to Kevin - 22, Keith - 20, Kenny - 16, Korey - 15, and
precious
Krissy (better known as Princess Krissy!) (T18) - 9 years - with
a smile that lights up the world!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terre Krotzer
terre@xxxxxxxxxxxx
 
" There are two ways of spreading light; to be the candle or the
mirror that reflects it." 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Show your family how much you care...
Get your Will and Living Will in place today... 
www.krotzers.com




-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx] On Behalf Of Yin May Tham
Sent: Saturday, June 13, 2009 6:47 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Having difficulty getting baby to accept CPAP


Hi there moms,
Does anyone have their babies on CPAP? Need advice on how to get
my daughter Vera now 15 months to accept it. The minute we put
the mask near her face, and she feels the air blowing at her, she
fights it off, in her sleep! If anyone had and overcame this
problem appreciate if you could share how you did it. Everytime
she turns, the mask shifts. If we make it too tight, it would be
uncomfortable. Also the mask, the Mini Me, is the smallest and
yet it's too big for her, given how small Trisomy 18 babies faces
are. The top nearly touches her eyes, the bottom touches her
upper lip.

http://mylittlevera.blogspot.com/search/label/equipment

Her diagnosis is severe Obstructive Sleep Apnea. Thinking of
giving up on CPAP but feeling guilty that if we don't get this up
and running she'll develop Hypertension later.


May
Mom to Vera, full Trisomy 18, now 15 months.


                  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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