Little Larissa - please read

[Banned]

Happy Birthday, Laryssa!

Banned

[brazilian]

Hi, friends!
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Today we had the birthday party for our little angel, and I had the opportunity to bring home the SmartCard to download the readings. Photos and links are posted below.

None of Dr. Pedro or Dra. Silvana were present at the party, so I could not have therapy details discussed.

I was told she is sleeping much better, and while carrying her on my lap I could notice she has gained weight as well, and looks much more healthier than ever.

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dsm, it was wonderful to see Anne! our prayers continue for her full recovery!
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OFF-TOPIC - I am in a hurry again, having just returned last Sunday from an unbearably hot&dry Las Vegas and heading to a freezing Buenos Aires this Tuesday, where I will be teaching for a couple of days. I would like to share my joy with you: please take a look at http://www.infocomm.org/cps/rde/xchg/in ... y_6128.htm (at the bottom of the page) and

http://www.onprojecoes.com.br/noticias.php?idnot=25 and

http://www.onprojecoes.com.br/portfolio ... posicao=71

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Encore Pro Report can be read at

http://www.baumgratz.eng.br/laryssa/rep ... 080628.htm

or downloaded at

http://www.baumgratz.eng.br/laryssa/rep ... 080629.pdf

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PICTURES OF 2008-06-29 - Laryssa's Birthday

[ozij]

So many balloons! Someone took the trouble to blow them up, someone took the trouble to hang them!


Congratulations, Nelson on recieving the prize. It's wonderful to see the tree changing like that - you must have taken great pleasure in participating inf that project.
O.

[-SWS]

HAPPY BIRTHDAY LARYSSA!

Brazilian, great to see the birthday pics. It looks as if everyone had a great time---especially Laryssa.

I'm very glad Banned sent the Encore Pro with Card Reader. The residual AI is very high. I understand you don't have any details from the doctors just yet. The first question I hope to have answered is whether the doctors think the high residual AHI can be attributed to unfamiliarity with the machine (since it's not set up as a fixed Bilevel having autobackup as they had originally planned).

Or rather do they attribute the high residual AI to a problem in physiology that they are trying to work on with fluctuating IPAP at a fixed backup of 20 BPM? Hope to hear very soon the exact nature of the challenges the doctors are encountering. I hope they can manage to get Laryssa's residual AI where it needs to be.

Please let us know how we can help!!! Laryssa's residual AI is still severe, so I hope the doctors are giving this priority.

-Steve

P.S. You other baby's description: "The Christmas tree, 164 ft. tall and floating on a lake, was made with LED clusters displaying images." Wow, sir! That is innovative to say the very least!!! VERY COOL!!!!!! I absolutely love it!

[ozij]

I wonder if the SV may be misinterpreting Laryssa breathing pattern because of her age and her size.

2.3 intended use
he BiPAP autoSV is intended to provide non-invasive ventilatory support to treat adult patients with OSA and Respiratory Insufficiency caused by central and/or mixed apneas and periodic breathing.

My emphasis

I would be treble cautious in reading the machine's software info in Laryssa's case - and I assume they can monitor her oxygenation quite well by other means in the ICU.
O.

[dsm]

Nelson,


Many thanks for the pics of Laryssa - delightful


Also, most impressed with the4 christmas tree project - congrats on the win

DSM

[-SWS]

I wonder if the SV may be misinterpreting Laryssa breathing pattern because of her age and her size.

2.3 intended use
he BiPAP autoSV is intended to provide non-invasive ventilatory support to treat adult patients with OSA and Respiratory Insufficiency caused by central and/or mixed apneas and periodic breathing.

My emphasis

I would be treble cautious in reading the machine's software info in Laryssa's case - and I assume they can monitor her oxygenation quite well by other means in the ICU.
O.

Apnea scoring on a single-channel flow sensor essentially entails measuring a percentage of flow reduced over time. I don't suspect the apnea flow-reduction percentages change regarding scoring criteria from adult to pediatric cases (I could be wrong). And that pneumotachograph sensor can discern even a faint heartbeat. So it can definitely pick up Laryssa's lower-volume flow patterns with necessary resolution/sensitivity to differentiate the severe flow reductions that should score as apneas. And, of course, the flow sensor can definitely differentiate her inspiration from her expiration, regardless of pediatric flow volumes and cycle rates. So I'm admittedly not sure where we might expect the algorithm to potentially yield prolific false-positives for apneas in a pediatric case.

However, I do suspect the adult emphasis of SV therapy may have to do more with the way the tissue elastic-recoil resistance models were mathematically derived for the SV algorithm. I believe the algorithm relies on elastic recoil resistance modeling to make the pressure-support curve a more comfortable fit. If my hunch is true, that may very well explain why SV is supposed to be for adults and not children: the toddle case of elastic recoil should yield a fairly different dynamic resistance curve than the adult recoil model. Herring-Breuer skew (regarding central apneas) may potentially factor in here with "tighter" pediatric recoil elasticity---in my own unqualified layperson's way of analyzing. Unfortunately I don't know the answer to this for sure. I am only guessing or really wondering out loud.

But if the SV algorithm really is intended for an adult, then perhaps Laryssa would be better off with fixed BiLevel, according to her original titration results. Perhaps Respironics tech support will be able to answer any questions the doctors may have about pediatric applicability to the SV algorithm.

[dsm]

Respironics say that for their Auto Algoritm ...

Hypops are 40% reduction for 10+ secs & Apnea is scored for 80% reduction for 10+ secs

I am assuming this applies to the Bipaps too

Cheers

DSM

[Banned]

It looks like the machine was setup as an SV. With no periodic breathing it looks like it would do well as a straight BiLevel. What happened to BPM-Auto?

Banned

[-SWS]

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.

So the prescription Brazilian describes above is for fixed BiLevel: a fixed EPAP setting of 5 and a fixed IPAP setting of 15.

I don't know anything about pediatric requirements. But I assume the low EPAP (compared to IPAP) may have to do with the fact that a two or three year old cannot muster as much diaphramatic expiratory effort as a typical adult. And that may even explain why CO2 retention factors in here.

Regardless, on page one we have a fixed BiLevel of 15/5 prescribed, and not Proportional Assist Ventilation also known as SV mode.

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

So here's where either intentional or unintentional SV mode enters the picture. That IPAP 5/15 must translate to IPAP(min)=5 and IPAP(max)=15.

With the above settings we would have CPAP mode of only 5 cm, but with adaptive SV capability turned on. Is that really what the doctors had the ventilator set at?




To achieve the fixed BiLevel settings that were initially prescribed on page one:

EPAP=5
IPAP(min)=15
IPAP(max)=15
BPM=Auto


Brazilian, when you get a chance will you please confirm exactly what the doctors want the machine to be set at? Thanks.

[brazilian]

I went today early in the morning to the hospital, to insert the SmartCard back on the BiPAP, and finally had the opportunity to meet Dra. Silvana!

A few moments ago I had the opportunity to discuss over the phone all the recent issues with Dr. Alberto, from Ventilar (the hospital's department that takes care of patients with neuromuscular dysfunctions that need ventilation).

He is an expert on the subject, and started today as principal doctor in Laryssa's case. She is scheduled to leave the ICU in two weeks time, and Ventilar will follow Laryssa all the time, even when she leaves the hospital.

Dr. Alberto will be accessing the forum tonight, and will post his comments on the subject, as he finds necessary.

He told me they actually changed the settings, disabling the BPM Auto, and forcing the breathing cycle, and they are also using an oximeter now on her, with 4s interval readings.

I do not have much more to say now, but I am more rested now to know we have a new expert professional to take care of our child. I told him about all you guys, and all valuable advice he may find here in this forum. He is a open minded person, and thanked all in advance.

[-SWS]

A few moments ago I had the opportunity to discuss over the phone all the recent issues with Dr. Alberto, from Ventilar (the hospital's department that takes care of patients with neuromuscular dysfunctions that need ventilation).
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He is an expert on the subject, and started today as principal doctor in Laryssa's case.
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I do not have much more to say now, but I am more rested now to know we have a new expert professional to take care of our child.

Perfect. Thanks so much!


We normally think and talk primarily about adult apnea on this message board. But there's so much more to respiratory care than apnea. To cite just a couple "tip-of-the-iceberg" articles that reflect how complicated this branch of medicine really is (articles potentially having no bearing to Laryssa's case):

http://www.rtmagazine.com/issues/articl ... -01_02.asp

http://www.rtmagazine.com/issues/articl ... -07_05.asp


My gratitude to the experts in the health profession, including all those who have come to this message board to help and share. I am glad Laryssa is in expert hands. And my thanks again to Brazilian and Banned.

[Guest]

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

Your generosity made me cry......... so nice to know there are still some great and caring people in this world. Brazilian you also are a very caring human being. Bless you both

[dsm]

I believe that the following settings could possibly help Laryssa (these are my non-professional opinion). This is using the SV capability of the machine to provide cautious extra support for when Laryssa is having breathing difficulties.

Epap = 6
IpapMin = 12
IpapMax =16
BPM = 12 (perhaps even adjusted up to 15 as Laryssa seems to breathe faster than we adults). #2 BPM on the SV is a backup rate not an absolute fixed rate, i.e. if Laryssa's breathing drops below the rate the machine will take over and maintain the BPm setting as a mininmum BPM.

The purpose of these settings would be to let the machine adjust that high pressure as it sees the need based on Laryssa's target airflow while providing adequate fallback Ipap at 12CMs. 15 is most probably causing some induced centrals.

DSM

[-SWS]

So in the other thread we saw just how easy it is for us amateurs to "under-consider" factors in constructing scientific methodologies (see discussion in that post, midway down, about 68 backed up breaths per hour as a methodology of no real measure).

I'm thinking if the dial-winging gets going in this thread, that we're going to witness rank amateurs grotesquely under-factorizing pediatric medicine.

My opinion: Let the doctors be the doctors. Pediatric medicine is not a hobby. None of the dial wingers in this thread have ever demonstrated a sufficient understanding of either pediatric medicine or physiology in general.

I don't mean to be rude but I do mean to be perfectly blunt. Sorry for the bluntness.


On the lighter side, here's a hobby store: http://www.redrockethobbies.com/
Riddle: What's missing on that page? Answer: Pediatric medical supplies and ventilators.

.