Little Larissa - please read

We are all so blessed to know of this beautiful child. She will probably never know or understand how important she is to all of us. Thank you for sending the beautiful pictures.

Hi Brazilian,

Nice pics of Larissa in your cap and shades!

Couple of points that you are already aware of with the device.

1. Turn the LED Backlight 'On' so the night staff can see the LCD.
2. Turn the Breath Rate 'Off' so it will default to Auto.
3. Do not exceed IPAP Max more than 10cmH2O above IPAP Min when running the device as an SV. (For Larissa probably 5cmH2O to 8cmH2O would work well)
4. dsm will hate me for this, but I would consider doing what you can to limit the alarms to their lower settings. I'm assuming the critical alarms cannot be limited, in any event.

Have a good trip to Mexico City. Let us know what masks work for Larissa. I would be curious how the ResMed Kidsta works for her.

Thanks,
Banned

Hey SAG, congrats that Gracie arrived!

SAG wrote:Further, if she continued to have a pattern of consistently reduced breathing (central hypoventilation), the BiPAP AutoSV would establish this as baseline breathing and NOT increase on its own unless it saw apnea events. The 4 minute "floating" analysis window would simply think that the hypoventilation was baseline and just sit there.

Both of the SV algorithms are geared to increase CO2, which is the exact opposite of what Laryissa needs. I think the more the "classic" BiPAP approach is used, the better, and do not rely on ASV to bail her out of trouble.

And elevated CO2 is pretty much a contraindication to ASV.

Banned wrote: 2. Turn the Breath Rate 'Off' so it will default to Auto.
3. Do not exceed IPAP Max more than 10cmH2O above IPAP Min when running the device as an SV. (For Larissa probably 5cmH2O to 8cmH2O would work well)

Just a reminder that SV mode may not be the correct modality in Larissa's case of central hypoventilation combined with CO2 retention.

Gotta be REAL careful with our well-intended message board dial wingin'...

-SWS wrote:

SAG wrote:Further, if she continued to have a pattern of consistently reduced breathing (central hypoventilation), the BiPAP AutoSV would establish this as baseline breathing and NOT increase on its own unless it saw apnea events. The 4 minute "floating" analysis window would simply think that the hypoventilation was baseline and just sit there.

Both of the SV algorithms are geared to increase CO2, which is the exact opposite of what Laryissa needs. I think the more the "classic" BiPAP approach is used, the better, and do not rely on ASV to bail her out of trouble.

And elevated CO2 is pretty much a contraindication to ASV.

Just a reminder that SV mode may not be the correct modality in Larissa's case of central hypoventilation combined with CO2 retention.

Gotta be REAL careful with our well-intended message board dial wingin'...

Good points. I was not stating a preference for Servo Ventilation over straight Bi-level (Synchrony). I was suggesting that if they do choose to use the device an an SV, they exercise some restraint.

Banned

Banned,
I would not be letting the machine run on BPM=Auto myself. I am certain the docs will give her a back-up rate.

Cheers

DSM

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CPAPopedia Keywords Contained In This Post (Click For Definition): auto

Banned, this thread has had more interesting developments---and more reasons for excitement and hope---than I have personally read in a long time!

I'm kind of guessing that Larissa's medical staff just may start her off by matching BiLevel settings from her hospital ventilator. If those settings appear to work well for her, then I would think they should serve as an excellent baseline. My guess is that once they analyze results of that transferred BiLevel baseline, then they just may see reason to attempt improvement... Or they just may decide to "sit tight" with those settings if all is well.

As a side note, the Resmed ASV algorithm is geared to increase CO2, at least in part, by fluidly altering machine frequency. By contrast the Respironics machine employs a much more traditional backup. Based on that CO2-influencing difference alone, my layman's hunch is that the Respironics SV implementation may stand a better chance of not provoking Larissa's hypoventilation tendencies than the Resmed SV machine. I'm strictly comparing SV modes, as opposed to talking about traditional BiLevel mode (which the Respironics BiPAP autoSV machine can also deliver to Larissa if configured that way).

However, I suspect that traditional BiLevel mode may prove to be the best modality for Larissa's etiology. We'll have to see what Brazilian or Larissa's medical staff eventually tells us. We definitely don't want to rush them in any way.

I am full of hope, Sir Banned!!!

She is beautiful!!! and what a smile!!! She could light up any room!!!

olá meus amigos!Já estava com saudades.Hoje estive com Larissa no final do dia por um longo tempo,conversamos muito.Ela está bem muito alegre,sorridente.Falei também com Dra Silvana por telefone hoje,está afastada em função de uma cirurgia mas passa bem vai ficar boa.

"Ninguém chega até você por acaso.Em tudo há o propósito de DEUS.
O mundo está nas mãos daqueles que tem coragem de sonhar e correr o risco de viver seus sonhos"

Um beijo azul do tamanho do céu.
dra Cacau-Cláudia Toledo

Translation by alta vista babel fish: olá my friends! Already he was with homesicknesses. Today he stows with Larissa in the end of the day for a long time, we talk very. It is glad, well very smiling. I also spoke with Dra Silvana for telephone today, is moved away in function of a surgery but she passes well goes to be good. " Nobody arrives by chance until you. In everything it has the GOD intention. The world is at the hands of that it has courage to dream and to run the risk of living its sonhos" A blue kiss of the size of the sky. dra Cacao-Claude Toledo................................................................................................... God Bless & thanks for the update Claudia

Hello my friends! I miss you already. Today I was with Larissa at the end of the day for a long time, we talked a lot. She is very lively (happy?) and smiling. I spoke also with Dr. Silvana by phone today, she is out of circulation becuase of (her) surgery, but is feeling well and will be OK.

"Nobody comes to you by chance. In everything there is the purpose of God.
The world is in the hands of those who have courage to dream and risk to live their dreams. "
A sky sized kiss of blue.
Cocoa-dra Claudia Toledo

We missed you too, Claudia - thanks for the update.
O.

Olá dra Cacau-Cláudia Toledo! Um grande abraço e muito obrigado!

Hi, friends!

I had a three day struggle with my laptop (viruses....), but am finally back... My trip to Mexico was postponed to August'31, next scheduled trip is InfoComm tradeshow at Las Vegas, on June'16~21...

Let's move to what I am sure you are all anxious to know about: Larissa is finally using her BiPAP!!!!!

During Dr. Silvana's absence, Dr. Pedro is in charge of Larissa's care, so we discussed all settings, and decided to start using the BiPAP during the day, when Larissa takes her nap after lunch... In this way, we are able to train the night personnel on the use of the BiPAP, and to monitor Larissa's adaptation to the BiPAP more efficiently. She will stay a few more days on the ICU, until we are sure she can be moved to the infirmary. No hurry moves at all...

The settings are the same as the ventilator's: EPAP 5, IPAP 5/15, Ramp 0 and BackUp Rate Auto.

During the training, we also simulated alarm conditions (apneia - 10s, patient disconnect - 15s and loss of input power). Alarm level is full on, by now.

Talking of comfort, Larissa is just d-e-l-i-g-h-t-e-d with her new machine, she says the mask is much more comfortable than the older one, she just wakes up from the nap and wishes to keep the mask on...! She also says: "Look, it is not over my mouth, I can speak...!"

And now, some pictures....

Thank you soooo much Brazilian!
That first picture is worth a million words - she looks so happy/relaxed/comforted. And it so comforting to me to know she has a doll to hug in the hospital!

Looks like the doll is helping her keep her mouth sealed... Lets hope mouth leaking doesn't become an issue, and she can stick to her comfortable mask.
O.

Thanks for that report, Brazilian!

Wonderful!!

May God bless Larissa and her friends.