Little Larissa - please read

-SWS wrote:Great points IMO, ozij.

ozij wrote:Sepsis - can cause major harm to many systems, so my absolute layperson's hypothesising can wonder if the first bad infection caused her such grave harm that she no longer breathes properly at night.

Well sepsis can cause acidosis. And central blood-gas chemoreceptors in the brain are pH based. So sepsis-based acidosis can presumably skew central breathing I would also think... albeit as a sepsis-based head-scratching layperson.

Molecular responses to acidosis of central chemosensitive neurons in brain

More along the above line of conjecture regarding sepsis-based damage as one possible pathogenesis for Larissa's central hypoventilation problem:
[quote="In "SLEEP RELATED BREATHING DISORDERS IN CHILDREN", Ian MacLusky, MBBS, FRCPC, FAAP"]Hypoventilation Syndromes- Damage or disturbance of function of the peripheral chemoreceptors (carotid bodies), central chemoreceptors and respiratory nuclei (situated on the floor of the fourth ventricle), or failure of the respiratory muscles, will result in hypoventilation (Table 4). As noted, wakefulness is a respiratory agonist, so any of these syndromes is liable to be most severe during sleep.[/quote]
http://www.stacommunications.com/journa ... athing.pdf

So far that's my favorite theory going, thanks to ozij. And great news from brazilian regarding the safe arrival of Larissa's BiPAP autoSV (HUGE thanks to Banned!!!).

Hi Brazilian,

Must have been a hectic few days, thank you for posting Larissa's PSG before you left!

Karen, at Pad-A-Cheeks said she was going to try and send some kid-colored mask-strap pads, so check at the front desk to make sure you have everything. Take time to breathe the Virginia valley air (Never been there, but I'm assuming the air is good). Toss the boxes and throw what you can in the Respironics Bag (I think there is room for a laptop in the documentation pocket on the outside of the bag).

All these caring folks here have you an Larissa in their thoughts and prayers. Many others have pay-palled or sent monetary donations to help with the cost of the Respironics BiPAP Auto SV. So be sure and tell Larissa's family and her Medical Team that the medical device is from all of us on the forum, and not just me.

Godspeed and a safe return from all of us, Nelson!

Banned

Banned wrote: So be sure and tell Larissa's family and her Medical Team that the medical device is from all of us on the forum, and not just me.

But, brazilian, please honestly mention that you and Banned have both been Larissa's biggest BiPAP AutoSV patron saints!

The rest of us are small but very happy fish to follow in your wake!

Ditto to SWS's comment.

Also Banned, was thinking more about risetime & how to compare it to your AdaptSV.

Again if we think of the AdaptSV as an automatic & the BipapSV as a manual, then the rise time is sort of like changing gears - the auto does it for you. The manual has it preset.

Once again we have a reason for the proximal sensor on the AdaptSV as it is sampling at the mask & thus the sleepers actual breathing, & does this sampling several times through the inhale/exhale cycle - per breath - & it is determining how fast or slow to change the pressure (rise & fall times) based on the data it is sampling as it samples it.

The fact that the BipapSV has so many things to change can seem daunting but with a little understanding it is surprisingly straight forward. It suits me to do the tweaking but I am also sure having it done for me would be possibly be nicer (less to be concerned about).

Where the BipapSV does offer additional benefits is when the RT needs to trial different machine actions when dealing with particular patients.

DSM

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

Take me from daunting to understanding. I'm still curious what settings (other than the prescribed 5/15) one might consider for Larissa's BiPAP Auto SV, first in SYNCHRONY (Straight BiPAP) mode. and then in SV mode.

SAG has suggested no ramp for Larissa in either mode, so I'm assuming Ramp and Ramp Start Pressure would be 'none' or '0' in both SYNCHRONY and SV scenarios.

In order to reduce the effect of annoying alarms, what specific settings would you recommend for Apnea Alarm, Patient Disconnect Alarm, and Low Minute Ventilation Alarm?

Should Breath Rate necessarily be set to 'Auto'? Is there an 'Auto' Setting?

What might be a good setting for Inspiratory Time?

What might be a good setting for Rise Time? Is 'None' or '0' and option and would you recommend it?

I personally would put the LED Backlight setting to 'On', as I personally like to see the LCD info in the dark.

Since Larissa is too little to tell how BPM,Inspiratory Time, and Rise Time are working for her, how do you know or guess at those settings?

I'm just trying to get a feel for the real numbers (settings) of the more complex parameters for this young lady.

Banned

Banned,

Many of those settings are RT determined but ...

If in SV mode then Insp time is negated as it only applies in Bipap Mode.
But to explain - Insp is usually set in Bipap mode as the max amount of time allowed for ipap part of the breathing cycle - it can go up to a max of 3 secs. This means that when breathing in, the breather has up to Insp secs to breathe in before the machine switches to epap pressure. The normal assumption is that Breathe in should be shorter than breathe out. The total Breathe in + Breathe out makes up the breathing rate the sleeper is naturally achieving (e.g. 2secs in + 3secs out = 5secs / breathing cycle & 60/5=12 BPM - 2.5 secs in & 3.5 secs out = 6 secs / cycle & 60/6 = 10 BPM). Rise time set too high may cause a sleeper to take longer breaths that then has its own issues. Restating INSP is for Bipap Mode & would apply to Larissa if the machine is configured like a Synchrony.

Setting BPM to a number establishes a backup rate in both Bipap AND SV mode. BPM = 10 says that if the sleeper's breathing rate drops below 10BPM the machine kicks in with a switch from epap to ipap to try to hasten the sleeper's breathing. If in SV mode it will often add some PS (extra CMS) to provide extra punch (servo ventilation).

Risetime applies for both Bipap & SV modes & my guess is 3 or 4 but the RT will know better based on that the higher that risetime number is the less air flows for a given breathing cycle & that matters in Bipap mode.

The three alarms are probably really needed in her case but what they should be set to is beyond our discussions (guesswork) here.

As for BPM - again based on what SAG & SWS & Ozij have already covered, I would again say any thing we come up with here will be guess work BUT from all I have learned, Larissa will need a back up rate & this si just like the S/T capability of a Synchrony & should be set as such.

My 'guess' is for a 10 BPM back-up rate.

So much of where we are at is guesswork & mostly good for learning about what the various settings do. I would expect the staff at the hospital who know hospital ventilators well, will know what is needed by way of the various settings & our guesswork won't really matter beyond our own interest. The Bipap AutoSV will not be any 'black magic' to experienced ventilator operators.

Cheers

DSM

dsm wrote: The three alarms are probably really needed in her case but what they should be set to is beyond our discussions (guesswork) here.

As for BPM - again based on what SAG & SWS & Ozij have already covered, I would again say any thing we come up with here will be guess work BUT from all I have learned, Larissa will need a back up rate & this si just like the S/T capability of a Synchrony & should be set as such. My 'guess' is for a 10 BPM back-up rate.

The Bipap AutoSV will not be any 'black magic' to experienced ventilator operators.

Thank you for making these things clearer for my own knowledge.

I know we are older than 3, but even Larissa will hate those alarms. Probably the alarms you can't do without are the ones you can't diasable or, as you said in another thread, turn down to their lowest settings.

You also stated that with your own BiPAP Auto SV which you run in SV mode, you, "Set BPM = Auto mode and it is best for me - the machine computes the current rate from spontaneous breath and calls this the 'av breath period'. It also calculates 'insp Period'. if tidal volume is less than 100ml it considers no breath has occurred."

Comparing the setup of a ResMed Adapt SV to a Respironics BiPAP Auto SV is like Dorothy saying, "Toto, 'I don't think we're in Kansas anymore". And maybe there is a certain beauty in that.

Thanks!
Banned

Olá amigo Nelson.......acabei de ler todas as mensagens lógico que com um tradutor aqui do lado pois não sou boa no inglês.Tive notícia agora cedo da nossa pequena LARISSA e graças ao nosso bom DEUS ela está bem melhor.Tenho falado muito em você com ela.Aqui a torcida é muito grande e tenho certeza que no final tudo vai dar certo.Deixo aqui um beijo azul cheio de carinho da dra.Cacau pra vochê.Que DEUS te guarde na palma de sua mão até que nos encontremos de novo.Carinho e muita paz nos te desejamos,beijos na ponta do nariz.
Sua amiga Cláudia Toledo de todo o sempre.

Roughly this is how the above post is translated.
At least we can get an idea of the sentiment.

--------------------------------------------------------------------------------. Hello friend Nelson. ......acabei of read all the logical messages that with a translator here of interest therefore I am not good in the English.Tive news now early of ours small LARISSA and graces to the ours good GOD she is much most better I have spoken very in you with her.here the supporter is very big and I am sure that in the end everything work.leave here GOD guards you in the palm of your hand to that we found us of new.affection and a lot peace in the you we desire, kisses in the tip of the nose. Its friend Cláudia Toledo completely the always.

Karen

Banned wrote:

dsm wrote: The three alarms are probably really needed in her case but what they should be set to is beyond our discussions (guesswork) here.

As for BPM - again based on what SAG & SWS & Ozij have already covered, I would again say any thing we come up with here will be guess work BUT from all I have learned, Larissa will need a back up rate & this si just like the S/T capability of a Synchrony & should be set as such. My 'guess' is for a 10 BPM back-up rate.

The Bipap AutoSV will not be any 'black magic' to experienced ventilator operators.

Thank you for making these things clearer for my own knowledge.

I know we are older than 3, but even Larissa will hate those alarms. Probably the alarms you can't do without are the ones you can't diasable or, as you said in another thread, turn down to their lowest settings.

You also stated that with your own BiPAP Auto SV which you run in SV mode, you, "Set BPM = Auto mode and it is best for me - the machine computes the current rate from spontaneous breath and calls this the 'av breath period'. It also calculates 'insp Period'. if tidal volume is less than 100ml it considers no breath has occurred."

Comparing the setup of a ResMed Adapt SV to a Respironics BiPAP Auto SV is like Dorothy saying, "Toto, 'I don't think we're in Kansas anymore". And maybe there is a certain beauty in that.

Thanks!
Banned

Banned,

from your post above

"In order to reduce the effect of annoying alarms, what specific settings would you recommend for Apnea Alarm, Patient Disconnect Alarm, and Low Minute Ventilation Alarm? "

The Apnea alarm allows the RT to set an Apnea threshold (say 8 ) & if the Apnea detection reaches that number an alarm will sound. In Larissa's case that could be safely set to say 10 (my amateur opinion).

The Patient Disconnect alarm speaks for itself

The Low MV alarm allows the RT to set a value for Litres per Min & if the machine delivers less than that volume of air the alarm sounds. In my amateur opinion I would feel comfortable with Larissa having that set to as low as 1.5 LPM. (Any lower flow than that really probably need attention).

DSM

#2 Revised my flow num down when I thought about how small Larissa really is and that her lung capacity at full stretch may only be 4 liters or less

[quote="PADACHEEK"]Roughly this is how the above post is translated.
At least we can get an idea of the sentiment.

--------------------------------------------------------------------------------. Hello friend Nelson. ......acabei of read all the logical messages that with a translator here of interest therefore I am not good in the English.Tive news now early of ours small LARISSA and graces to the ours good GOD she is much most better I have spoken very in you with her.here the supporter is very big and I am sure that in the end everything work.leave here GOD guards you in the palm of your hand to that we found us of new.affection and a lot peace in the you we desire, kisses in the tip of the nose. Its friend Cláudia Toledo completely the always.

Karen

Hi. My name is Gallo and I´m Brazillian best friend. I living in Brazil, Minas Gerais State, Belo Horizonte city. I don´t know personally little Larissa yet, but I will, in the next week. Yesterday I gave to her a TV, because the hospital TV was broken.

The Larissa case got publicity in the forum and I so glad with everybody.

Nelson is a good man and had a generous attitude to put this problem here, and ask for help.

Thanks Banned for concern. You make an affectionate and unforgettable gesture.

Hug´s to all.

Mineiro

Just a reminder what all this understandable excitement and joy is about!!
.

A tip about automatic translation (or at least about google automatic translation) they are very sensitive to misplaced punctuation marks. Once you put spaces after the periods in that message, things make more sense.

Second tip: sometimes, guessing at the text and having the guess translated, or taking the weire things and having separated separately also helps.

Hello friend Nelson ....... I just read in the messaging software that with a translator on the side here because I am not good at English. Now I have news soon of our small LARISSA and thanks to our good God she is much better. I have talked a lot about yourself with her. The crowd here is great and I am sure that in the end (will) make sure (that) everything will work out. I would kiss blue full of affection of dra. Cacau get vochê. Let God save you in the palm of his hand until we get together again. Affection and much and much peace, we miss you, kisses the tip of the nose.
Your friend Claudia Toledo for ever and ever.

In Latin languages, possesive are gendered, based on the object, no the subject. And objects are also gendered. Hence, "sua amiga" is most probablly "his friend" in English, a combination of the polite/formal third person, and feminine gendered posessive.

Anyone who is in the mood for a good laugh at the foibles of translating from one language to the other should read Mark Twains take on the German laguage. http://www.crossmyt.com/hc/linghebr/awfgrmlg.html

Here's a short quote:

Every noun has a gender, and there is no sense or system in the distribution; so the gender of each must be learned separately and by heart. There is no other way. To do this one has to have a memory like a memorandum-book. In German, a young lady has no sex, while a turnip has. Think what overwrought reverence that shows for the turnip, and what callous disrespect for the girl. See how it looks in print -- I translate this from a conversation in one of the best of the German Sunday-school books:

"Gretchen.
Wilhelm, where is the turnip?
Wilhelm.
She has gone to the kitchen.
Gretchen.
Where is the accomplished and beautiful English maiden?
Wilhelm.
It has gone to the opera."

O.