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

I am going to ask for any help available out there! I need collect 
information about any infants that have been on a cpap or bi-pap machine at 
home. I am trying to find one that I can get and get serviced in Nebraska. 
What I need is the machine model , phone number or the home health care 
place and phone number where you got it. I am trying to keep my son in the 
hospital until I can find one but they want to send him to a rehab place 4 
hrs away. I am driving 4hrs a day now to go to the hospital where he is now. 
But they don't want to keep him. I really need help finding information this 
weekend to give to the social worker to find one for us to use at home. Can 
anyone help!!! Please!!!
Thanks
Kelly (mom to Amos months tri-18)
----- Original Message ----- 
From: "Kelly Rosberg" <rosberg2@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Thursday, September 07, 2006 8:35 AM
Subject: [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
>
>
> 


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

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