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

I don't know for sure, it is the hospital one. They say they can not find 
one in Nebraska that they could service and teach me how to use. Could you 
please sent me the information on the model and company you use , so I can 
get in touch with them , when you reply? I really want to get him home. We 
miss him so and I have to drive 4 hrs a day to see him now, and have six 
other small children in daycare and school . Things are hard now but you 
just keep going.
Thanks for your help, it will be appreciate.
Kelly
----- Original Message ----- 
From: "Loren Warnemuende" <lorenwarn@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, September 06, 2006 9:34 AM
Subject: [tri-med] Re: sleep apnea in Tri-18 babies


> I'm coming onto this VERY late--I'm so sorry!  I hope you've gotten
> some helpful info!
> Our daughter Keren (T18) was diagnosed with sleep apnea at four
> months and they immediately put her on a cpap with a machine--AT
> HOME. There was never a question and it wasn't an issue. We
> originally got our machine through Apria, though recently switched to
> another home healthcare company. Keren was only about nine pounds
> when she first used the cpap. Is it the type of machine they are
> using that's the issue? (Though I can't see why that would be a prob-- 
> they're all basically designed the same way).
>
> I hope you're finding answers and can have Amos at home soon!
>
> Loren (wife to Kraig, mom to Keren Elyse, T18, 3 1/2 years old!
> (9/27/02), and Clarissa Joanne (7/17/05) )
> Southeast Michigan
> http://webpages.eng.wayne.edu/~ad6075
>
>
> On Aug 27, 2006, at 11:34 PM, Kelly Rosberg wrote:
>
>> Hi, my son is 4 months old and has apnea spells. He is in the hosptial
>> using a cpap machine for this and it really helps. The problem is that
>> the hospital keeps telling me that the cpap machine is not approved
>> for
>> infant home use, so I cant get one. I dont want to put him in a
>> nursing
>> home just for the machine but he needs it at night for the apnea
>> and to
>> sleep well to gain weight. Any suggestions? He is also on 3/4 liter of
>> o2 during the day and a apnea monitor. But they only seems to
>> happen at
>> night for now. He does have them all the time when he gets sick,
>> this is
>> how I know something is wrong but It takes forever to get anyone to
>> treat him after they see the trisomy on his records from other
>> hospitals? Any suggestions on this too?
>> thanks
>> lonely uninformed mom of Amos with Tri-18 and 13 other kids who are
>> beautiful and healthy
>>
>>                   Building ___ooOOoo__ Rainbows
>>                        www.trisomyonline.org
>>                   Families Helping Families On-line
>>
>
>
>
>                  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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