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

Kelly,

Do you have a medical supply company in your area?  Something like Norco or 
MedNow?  They are who I got Elanor's cpap from.  The hospital had nothing to 
do with it.  They brought it, trained me, and service it all themselves.

Jennifer Vanderbeek
Mom to Arwen, 8; Elanor (T18), 6; caregiver to Joe and Eric, and husband to
Andrew :)

----- Original Message ----- 
From: "Kelly Rosberg" <rosberg2@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Friday, September 08, 2006 5:37 PM
Subject: [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
>
> 


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

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