Little Larissa - please read

brazilian · Post by **brazilian** » Mon Apr 21, 2008 9:19 pm

Hello to all in this forum, and greetings from Brazil!

I am a 50 yo enginner, born and living in Brazil, and I have been diagnosed with OSA 2 yrs ago, This forum was of great help when choosing the proper equipment. I must say that my life quality improved greatly after starting treatment, and I often check the forum for new information.

Presently I own a ResMed S8 AutoSet Vantage for home use, and a Respironics REMstar 100M for travelling abroad (which I do quite a lot). I have two full face masks, a ResMed Ultra Mirage and a ResMed Mirage Quattro (my favourite).

The reason I am posting this is that I learned something recently that broke my heart, and I would like to ask some advice from anyone who could be interested in helping me. Please follow.

In Brazil, there is no government aid for OSA patients, the national health service is quite poor, and you need to rely on private health plans, if you have the money to pay for that.

I was introduced recently to a little 3-year old girl, called Larissa (see picture below), who has suffered from sleep apnea since she was 1yr9mo old. She has already had 3 cardiorespiratory arrests due to that, and has been since then living in the intensive care unit of a public hospital, in a ventilator system during the nights.

She is confined to the hospital, and can not leave it, because their parents are utterly poor and do not have the slightest condition to buy the recommended equipment (Respironics Synchrony BIPAP). She is prescribed a 15/5 pressure level.

She is a lively and intelligent child, and plays everywhere around her hospital room, but this is all of life she has had the opportunity to experience so far.

Importation taxes are so high in my country, that the equipment would cost almost three times more if they had to buy it.

I talked to her doctor today, and asked her if she could use a CPAP with EPR machine, which is much cheaper (although still quite expensive for our parameters). The doctor could not answer me, since they have never had the chance to test it with the girl.

Now, the questions I have to this forum:

- Could possibly a CPAP with EPR be suitable to her? I am traveling to Virginia, USA next week, and am considering lending them my ResMed S8 AutoSet for a week's test. If this works, they could have a better option than an expensive BIPAP.

- I always travel with my CPAP prescription with me, and I could bring one device along with me without any problems when I return to Brazil on May'2nd. This may be the silliest of the questions, but could anyone, by any chance, have an used CPAP (or even a BIPAP) machine that could be donated to her?

Sorry for my frankness, but I am really intended to do something to allow this lovely girl to have an almost normal life, with her parents and in her own home. I do not have the means now to buy myself a BIPAP for her, otherwise I would do that.

I will be more than glad for any advice or help you could give me.

Best regards to all.

dsm · Post by **dsm** » Mon Apr 21, 2008 9:59 pm

Brazillian,

Unfortunately the EPR settings only go up to a gap of 3 CMS but what you are describing is that the girl needs a CMS gap of 10 CMS (5 epap 15 ipap gap=10).

Also the synchrony is a special model that has quite a few adjustments.

The settings you describe and the child's age tell me it is being used as a ventilator and that requires special models such as the Synchrony.

Be careful what machine you choose or accept as not all Bipaps or Bilevels will act as ventilators. Ideally you want one that can record nightly data but that is not critical.

Can you get more detail re if the machine is being used as a ventilator ?

(ventilators force breathing & are used for people with serious lung or breathing disorders)

DSM

sleepycarol · Post by **sleepycarol** » Tue Apr 22, 2008 8:45 am

I know our intensive care is very expensive here in the states -- at least where I am located. It doesn't make sense that if all she has is OSA that they would keep her in intensive care unit. Even if the hospitals are very poor -- that is still an expensive way of dealing with it. Is she on a vent during the day? If not why is she confined to her room during the day?

I had a nephew that was on a vent full time and he was able to live in his own apartment (with assistance) as it was cheaper on our medical assistance (he was on Medicaid) program than living in a hospital setting.

It would appear from what little you have told us that there are other factors involved here besides sleep apnea.

Banned · Post by **Banned** » Tue Apr 22, 2008 8:15 pm

Brazillian,

My heart goes out to you and your concern for this little girl. She is gravely ill. With numerous hospitalizations since January, a 3 minute cardiac arrest, her main issue appears to be that she is a CO2 retainer. CPAP with C-Flex/EPR, in all likelihood, would not let this little girl get rid of the excess CO2 as efficiently as a Bi-level (servo?) ventilator that she desperately needs. Even the ResMed Bi-level servo-ventilation machine that I use, though it would give her the deep exhalation support she needs, would not meet her concurrent inspiration 15cmH2O requirements. She truly does need that Respironics Bilevel ventilator of some sort. I sure wish I had one to give you.

Best to you and this lovely little lady,
Banned

goose · Post by **goose** » Tue Apr 22, 2008 9:18 pm

I don't read Portuguese very well at all, but from what I can translate, the Synchrony is the recommended machine -- for whatever reason.

The PSG done September 19 '07 showed I believe severe obstructive apnea and severe centrals (If I read it correctly). Most other test results are pretty normal.....

There were 3 cardiac events (and what appears to be a 3 minute cardiac arrest - I could be wrong in that translation) and it looks like she was intubated for nearly a month in July 07 thru August 07, and that seems like an awfully long time for intubation to have a "normal" quick recovery once extubated -- but I'm certainly not a medical expert by any stretch, so I don't know.....The PSG was done about a month later

Con un diccionario, puedo leer españoles bien (más o menos), solamente Portugese muy poco.

My heart goes out to you Brazilian but it sounds like that Synchrony machine is what she really needs.....

Take care - and good luck
cheers
goose

Banned · Post by **Banned** » Tue Apr 22, 2008 9:55 pm

But Brazilian,

With all that being said, and not withstanding, in all likelihood, it will not work, I will package and ship, my ResMed S8 Autoset Vantage, 2-day UPS or FedEx to the USA destination of your choice. I will pick up the shipping costs and include the original ResMed Clinician's Manual with the unit. You can send your shipping details on this thread. Don't let them clear all the rain forest or we'll all be breathing more CO2. Thank you.

Banned

brazilian · Post by **brazilian** » Tue Apr 22, 2008 11:15 pm

Dear friends:

I am deeply moved by all your concerns, advices and actions. Words and acts like yours are a true balsam for the soul in these days we are living.

I will be staying at Hyatt Fair Lakes from April 28th to May 02nd.
12777 Fair Lakes Circle, Fairfax, Virginia, USA 22033
Tel: +1 703 818 1234 / Fax: +1 703 653 6190

I phoned the hotel, and they can take care of any parcel that may arrive prior to my arrival there.

I can tell GOOSE and BANNED that your interpretation of the doctor's prescription was pretty accurate, she has severe obstructive apnea and severe centrals, she is indeed a CO2 retainer, has had a 3 minute cardiac arrest and spend a month intubated. Sorry I did not translate everything beforehand, but I was in a hurry to post...

SLEEPYCAROL, intensive care is very expensive here as well, and she on a vent during sleep only. I think I did not express myself correctly when I said "around her hospital room", she is not really confined to it. I was told she plays in the corridors, but she is not allowed to go to other rooms, since they are intensive care, naturally.

The reason she stays there is that is the only place in the hospital that has the ventilator machines, they do not have it on infirmary or regular rooms. I do not have plenty of details about it, but I will try to find out more to tell you.

DSM, she is on a ventilator, they do not have CPAPs or BiPAPs in the hospital.

The rain forest shall never die!

Banned · Post by **Banned** » Tue Apr 22, 2008 11:38 pm

brazilian wrote: I phoned the hotel, and they can take care of any parcel that may arrive prior to my arrival there.

So, let it be done. I will ship UPS 5-Day Ground within the next two days. I will post the UPS Tracking Number on this thread.

Banned

sleepycarol · Post by **sleepycarol** » Wed Apr 23, 2008 6:14 am

Good luck and hope things work out!!

May God be with you and her family!!

Thank you Banned for your generous offer!!

goose · Post by **goose** » Wed Apr 23, 2008 11:11 am

Hey Brazilian,
Not to worry about the lack of translation - it was a great exercise for me. My Spanish is much better than my Portuguese but the similarities made it a bit easier (though it's been 17 years since I've really practiced my Spanish).....I did leave out the CO2 retention.....

Banned -- your generosity will provide you with many good Karma points!!!! It is a wonderful gesture and will hopefully be just "what the doctor ordered".....
It is also a great example of our "problem" crossing borders as well as solutions crossing borders. These kinds of actions prove that down deep, we are truly one planet!!!!

As things progress Brazilian, please come back and let us know how things are going.....You obviously care deeply for the young lady, and now you have the attention and prayers of the cpaptalk community. Again, let us know.....

Take care
cheers
goose

dieselgal · Post by **dieselgal** » Wed Apr 23, 2008 12:40 pm

Banned- You are very generous and I appreciate your compassion.
Brazilian please keep us informed of the little girl's condition and let us know if the machine helps her.

Banned · Post by **Banned** » Wed Apr 23, 2008 2:23 pm

Brazilian,

Change in plans. I will not be sending the ResMed S8 Autoset Vantage as she would eventually become intolerant or succumb to the CO2 buildup. Conversely, the Respironiic's BiPAP Synchrony would likely be a less than optimal solution. Please inform the doctor that you will be providing Larissa with a new Respironic's BiPAP Auto SV upon your return from the US. The machine is provided, courtesy of Pulmonary Solutions, Santa Clara, CA (San Francisco Bay Area). Pulmonary Solutions added (2) free children's nasal masks (F&P FlexFit406 and a ResMed Mirage Kidsta Small). You will be receiving (2) packages. One will be the unopened Respironics BiPAP Auto SV, with complete documentation. The other will have the children's masks. The Respironics BiPAP Auto SV will meet Larissa's IPAP requirements and provide servo-ventilation for her central apneas. More importantly, the EPAP will help her eliminate the excess CO2. Ask her doctor to please look at the attachments below. Make sure the doctor sets her IPAP PSMIN to 15cmH2O and the IPAP PSMAX to 25cmH2O (always within 10 of PSMIN). Make sure he sets her (breath) rate on 'Auto'. You can read more on the real-life analysis and effects of the Respironics BiPAP Auto SV on this current CPAPtalk forum, please see 'Using a BiPAP Auto SV'. Hopefully Larissa will be going home with the correct machine, and even though she is cute, the doctor could probably use the ICU bed. Ask the doctor if you can meet Larissa's family and stay informed of her progress so you can pass on her reports to her friends in the USA. She will truly be the poster-child for the Respironics BiPAP Auto SV. Lastly, try and spend less time around hospitals, you become much to attached, and then we do, too.

Best,
Banned

http://global.respironics.com/UserGuide ... 043629.pdf

http://global.respironics.com/UserGuide ... 042977.pdf

http://global.respironics.com/UserGuide ... 040200.pdf

dsm · Post by **dsm** » Wed Apr 23, 2008 2:30 pm

[quote="Banned"]Brazilian,

Change in plans. I will not be sending the ResMed S8 Autoset Vantage as she would eventually become intolerant or succumb to the CO2 buildup. Conversely, the Respironiic's BiPAP Synchrony would likely be a less than optimal solution. Please inform the doctor that you you will be providing Larissa with a new Respironic's BiPAP Auto SV upon your return from the US. The machine is provided by me, courtesy of Pulmonary Solutions, Santa Clara, CA (San Francisco Bay Area). Pulmonary Solutions added (2) free children's nasal masks (F&P FlexFit406 and a ResMed Mirage Kidsta Small). You will be receiving (2) packages. One will be the unopened Respironics BiPAP Auto SV, complete with all documentation and clinician's manual. The other will have the children's masks. The Respironics BiPAP Auto SV will meet Larissa's IPAP requirements and provide servo-ventilation for her central apneas. More importantly, the EPAP will help her eliminate the excess CO2. Ask her doctor to please look at the attachments below. Make sure the doctor sets her IPAP PSMIN to 15cmH2O and the IPAP PSMAX to 25cmH2O (always within 10 of PSMIN). Make sure he sets her (breath) rate on 'Auto'. You can read more on the real-life analysis and effects of the Respironics BiPAP Auto SV on this current CPAPtalk forum, please see 'Using a BiPAP Auto SV'. Hopefully Larissa will be going home with the correct machine, and even though she is cute, the doctor could probably use the ICU bed. Ask the doctor if you can meet Larissa's family and stay informed of her progress so you can pass on her reports to her friends in the USA. She will truly be the poster-child for the Respironics BiPAP Auto SV. Lastly, try and spend less time around hospitals, you become much to attached, and then we do, too.

Best,
Banned

http://global.respironics.com/UserGuide ... 043629.pdf

http://global.respironics.com/UserGuide ... 042977.pdf

http://global.respironics.com/UserGuide ... 040200.pdf

-SWS · Post by **-SWS** » Wed Apr 23, 2008 2:31 pm

Tears of joy in my eyes thanks to Banned and Pulmonary Solutions of Santa Clara, CA.

Absolutely wonderful.
.

sleepycarol · Post by **sleepycarol** » Wed Apr 23, 2008 2:39 pm

Banned --

You are a kind and generous sole that has a heart of gold!!

Your gift will have "ripple effects" on many lives. It is no small feat that you have accomplished for this little girl. Thank you so much for doing what you can to help.

May God bless you a thousand times over.

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