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

Kelly,

I can't really be of any help to you as we are in Australia. But I 
think I did post before to you about Tess being on CPAP and then 
BIPAP. The company name was RESMED here in New South Wales Australia. 
She was a tiny infant when she first went on to CPAP, so it IS 
POSSIBLE and don't let them tell you otherwise.

At 09:37 AM 9/09/2006, you 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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