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

----- Original Message ----- 
From: "Terre Krotzer"
> Our option was to trach Krissy.

Hi May,
I am catching up so this is a bit late. Alex was on C-PAP from about 10 
months of age, he graduated to Bi-PAP and now just has flow past oxygen as 
needed or the Bi-PAP depending on how bad he is.

I wont hassle you with the long and involved story but like so many others 
Alex did not tolerate C-PAP well. In the end they removed his tonsils and 
adenoids just before his first birthday. There was nothing wrong with them, 
and they werent the cause of his obstruction, it was only to allow him to 
have more positive airway space. Had we not done that the answer would have 
been a trach in which case he wouldnt have been allowed home from hospital. 
(no kids home on trachs back then)

It didnt work totally and eventually in 97 we brought him to the US to get 
him fitted with Bi-PAP. He tolerated the Bi-PAP much better as it is a lot 
more comfortable. Even so he doesn't like it. A couple of tricks I used was 
to put the mask on after he was alseep or try putting it on without turning 
it on until after he was asleep.

That was one of the benefits of the Bi-PAP we could have a ramp up. Meaning 
that it went on with minimal pressure flowing through when it was first 
turned on and then it gradually increased in pressure until it reached what 
it should. The other plus of the Bi-PAP is that his machine self triggers. 
Meaning that it registers the pressure of Alex's own breathing and only 
supplements if he is not breathing hard enough (Alex hypoventilates) or is 
he has an apnea.

Others mentioned masks leaking - we prefer the gel mask for comfort and to 
prevent leaking. We did however have to shop around for a narrow mask as 
most were too wide for Alex's narrow face. We settled on the Adam system. 
Alex's machine also adjusts for minor air leaks - meaning that if he has a 
leak the machine will increase the pressure to compensate. You can also get 
machines that alarm if there is a pressure leak or if the mask is taken off 
in their sleep. I still use an intercom in Alex's room and am so attuned to 
the sound that I can tell  if their is a leak or if its off by the noise. 
That said Alex is now smart enough to turn the machine off before removing 
it so it doesn't alarm, same with hsi monitor :-)) Way too smart for his own 
good!!

All that said if I had to do it over again we would go with the trach. I am 
not sure the PAP dramas to avoid the trach was worth it. A bit like the 
g-tube. We fought against it for so long and then afterwards I wondered why 
I made his life so difficult by avoiding it.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (14 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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