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

Kelly,
Hopefully this information will be helpful for you.

Keren's machine is a little older model, but you can find more recent  
ones on their website. The brand is Respironics Inc. The model is  
Virtuoso LX; model #1965224. Different providers offer different  
machines, but each machine can be programed with the correct  
pressure. The biggest factor, we've found, is finding the right mask.

Her mask is from SleepNet. Her mask is the MiniMe Petite Small, model  
#50214. I have that completely memorized because we had to work  at  
getting that particular mask for over a month. Before that we had a  
MiniMe Small, and believe me, there's a difference. the Petite Small  
has a headgear that actually fits Keren's small head, and the nasal  
mask is structured better. There are actually four sizes, and there's  
one smaller than the Petite Small. The people at SleepNet were  
helpful in giving me this info (I think you can get their phone  
number off their website), unfortunately they're a smaller company  
and not all providers work with them. However, if you have a  
prescription from your doctor (any doctor willing), you can push it  
through. (I can explain that better if you run into this).

The provider we were using until a couple months ago was Apria  
Healthcare, which is a national company. I'm sure you're hospital has  
connections with it. Some people have had lots of problems with them-- 
because they're a big company, they sometimes forget the little  
people. We didn't have any issues with them in this part of Southeast  
Michigan until we tried to get the new mask. After a bunch of hassle,  
we switched to a smaller company, and the very next day Apria called  
and said they could do what we asked.

Anyway, so that's our story on cpap masks....

Keep pushing!!! I hope you'll find help very 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 Sep 8, 2006, at 7:37 PM, Kelly Rosberg wrote:

> 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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