Little Larissa - please read

Banned:

I am simply speechless... and no words could describe what I feel right now inside my heart, and the waves of joy that are spreading around Larissa.

I have just phoned her doctor (Dr. Silvana Teotonio, +55-31-9973-7404), and told her the news, and send her an email with all information you posted.

You can be sure that I will let you all informed about Larissa's progress. In fact, I am anxious to meet her personally, because I really had not had the chance yet, I was only told about her case by a doctor's wife, and then asked for all info about her.

Millions of thanks to you and to Pulmonary Solutions of Santa Clara, CA.

I don't normally say much here, have a tendency to say the wrong things...and right now I am speechless.

Brazilian:
You must be a man of great compassion with a caring heart for those in need. Please know that you will be in my prayers. Please let Larissa and her family also know that although we don't have the answers they to will be thought of and in my prayers.

banned:
I don't know where to stick you, I cubby hole people. I haven't defined a box for someone with a character such as yours. You certainly have a caring heart and you are a "man of action". You shall not be left out of the prayers.

dsm:
It has been a real treat to read your posts and those of many others here at cpaptalk and I marvel at the knowledge you all are willing to share with those who are trying to grasp/understand cpap therapy. You all are unique individuals.

Blessings to all!

Fred

this board is amazing.

That being said, is there anything else the rest of us can pitch in for, i.e. a supply of tubing or filters?

Kudos to everyone involved! You have done A Very Good Thing.

I will contribute a Starter Pack of Pur-Sleep essential oils if you think this is appropriate, Brazilian. Let me know tonight and I will get them off in tomorrow's mail so you will get them while you are here.

(Pur-Sleep's web site: http://www.pur-sleep.com/)

Banned - your an amazing guy! Not many people out there are willing to step up like you do. Your generosity is inspiring.

mellabella wrote:this board is amazing.
That being said, is there anything else the rest of us can pitch in for, i.e. a supply of tubing or filters?

Nothing to do but wait for some results. Brazilian is going to deliver a complex piece of medical equipment to medical system that has probably never seen a Respironics BiPAP Auto SV, to be delivered to a family that probably doesn't speak English, probably can't read the manual, and may or may not have interrupted electricity service at night (so the child is in her mask and the machine shuts off). Will the medical staff know how to get into the set-up menu, tweak the machine properly, and then exit the set-up menu, so the child or her family can't inadvertently change the settings? Once set-up, can the staff convey to the family how to use the machine properly? Then there are the numerous alarms on the machine that may drive the medical staff and family crazy. Doug stated that the LPM Alarm was very disruptive and annoying during his first night of sleep on the the BiPAP Auto SV. Perhaps Brazilian is going to haver to suggest to the medical personnel that they set the LPM parameter at its lowest setting to lesson the likelihood of inadvertent alarms. Then there is the concern that Doug stated about IPAP 15cmH2O that seems to be a threshold for mask leaks. This little girl knows nothing about mask leaks. Can the medical staff train the family about controlling mask leaks? I do not know if it would be appropriate to ask Brazilian to suggest to the medical staff that they consider lower the child's IPAP pressure to 14cmH2O (to help control leaks), and allow the machine to provide the additional ventilation support when needed? There is the whole big question of real-world usability for this child. I would be hopeful that when the medical staff receives the machine, they will move the Larissa to a non-acute ward and monitor the machine's functionality and the child's use for several nights before sending her home with it. My biggest concern is keeping the alarms at a minimum so the hospital staff or family don't end up getting really irritated. Hopefully these will be seen as small opportuinitys for Larissa's medical team and family. It does offer more challenges than sending the machine to the aunt in Wildwood, New Jersey.

Best,
Banned

Hi, Banned!

Thanks for expressing your concerns so clearly, and to forward more valuable advice!

I'd lilke to comment:

//A complex piece of medical equipment to medical system that has probably never seen a Respironics BiPAP Auto SV //

-> thats probably true. there are clinics in our town that have expert physicians that have knowledge of advanced models, but that is not the specific case of Larissa's doctor.


//to be delivered to a family that probably doesn't speak English, probably can't read the manual//

-> I also had this concern, and intend to translate myself the essential parts of the manual, and also assist them in understanding the equipment and its functions

//, and may or may not have interrupted electricity service at night (so the child is in her mask and the machine shuts off).//

-> Although electrical energy is quite stable in our town, I was considering buying myself an UPS for her, probably an APC Back-UPS unit, that may hold the machine for a few minutes, and sound an alarm to the lack of electricity

//Will the medical staff know how to get into the set-up menu, tweak the machine properly, and then exit the set-up menu, so the child or her family can't inadvertently change the settings?//

-> I will personally look at that, and if it is the case I will contact my personal doctor (who is already aware of Larissa's case) for help.


//Perhaps Brazilian is going to haver to suggest to the medical personnel ....//

-> I will forward all suggestions to the medical team, and make sure they understand all of it.

// I would be hopeful that when the medical staff receives the machine, they will move the Larissa to a non-acute ward and monitor the machine's functionality and the child's use for several nights before sending her home with it. //

-> That is their original plan, and it is stated in the doctors declaration - second page: "quando então poderemos programar sua alta para enfermaria e posteriormente para o domicílio." Rest assured that they will not simply pack Larissa's stuff and say a hasted goodbye to her...

Regards

Brazilian,

The packages are scheduled to arrive at your hotel in Fairfax on Monday, April 28th. The http://www.ups.com/ tracking number for the medical device is 1Z8335450258759044. The tracking number for the masks is 1Z8335450259560658. The shipper did open the Respironics box and add a bit more packaging material. Have a good flight. Let us know that you received the packages. The very helpful folks at Pulmonary Solutions wish you, the medical team, and Larissa the best.

Banned

Question for dsm (Doug) and SWS,

With you gentlemen being perhaps the most knowledgeable on the Respironics BiPAP Auto SV, it would appear that EPAP, IPAPmin, IPAPmax, and BPM (Auto) are the major parameters to be set by Larissa's doctor and the medical staff. Other than setting those (4) doctor prescribed parameters, and tweaking the machine to avoid any "unnecessary" alarms, are there any other settings to be particulary concerned about in your opinion? Is there a 'Mask' setting? Does the 'Ramp' setting apply to the machine in ASV (Auto Sevo Ventilator) mode? and if so, why would anyone use ramp on a bi-level machine? Do you set the "Rise Time' in ASV mode? Under what conditions would you manually set BPM (Breathes per Minute) versus setting it on 'Auto'? As a regjular user of the 'other' brand of SV machine. i'm starting to warm up to your reports on the Respironics BiPAP Auto SV.

Brazilian,

FYI - The advantage of these fairly recent Bi-Level Servo-Ventilation machines is they allow the medical team to set the machine at the doctor's prescribed inspiration pressure (IPAPmin), while concurrently setting a higher IPAP parameter (IPAPmax) which allows the servo-ventilator function to supply higher pressure levels in response to the patient's periodic breathing or central apneas.

Just a note - Larissa's medical team should have no problem setting up the machine to her doctor's prescribed settings. And I have absolutely no business venturing any opinions on a doctor's prescribed settings. However, keeping IPAPmax within 10cmH2O of IPAPmin should prevent any possible 'runaway IPAPmax' pressure, that has on occasion, been reported with this particular machine.

Banned

Banned

Larissa would more than likely want & benefit from ramp (which is available)

Also if Larissa has any issue with stopping breathing (as for example DLFO does) then setting a back-up rate may need to be considered.

The Bipap AutoSV by default is set with BMP=AUTO (variable BPM)

If for example a back-up rate of 10 BPM were set, then if Larissa's breathing dropped below 10 BPM the machine would use its SV capability to lift her breathing rate back to 10BPM

Other than that the docs should consider the conventional set up (based on a Bilevel titration)

Synchrony settings
epap=5
ipap=15

Bipap AutoSV settings
epap=5
IpapMin=5
IpapMax=15

#2 corrected the settings

But if I were setting this machine up, I would probably try Larissa as follows
epap=5
IpapMin=10
IpapMax=20
If that doesn't meet requirements then lift IpapMin up until it does.

A gap of 10 CMS on such a young child is going to be a bit hard for her to cope with whereas setting IpapMin to 10 will be much easier, then when she is asleep the machine will lift the CMS if it needs to.

I am sure there are enough adjustments that they can get her set up very well.

DSM

#2 correvted a typo I had missed re settings

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, Titration, Ramp

dsm wrote: But if I were setting this machine up, I would probably try Larissa as follows
epap=5
IpapMin=10
IpapMax=20
If that doesn't meet requirements then lift IpapMin up until it does.

A gap of 10 CMS on such a young child is going to be a bit hard for her to cope with whereas setting IpapMin to 10 will be much easier, then when she is asleep the machine will lift the CMS if it needs to.

I am sure there are enough adjustments that they can get her set up very well.

We are unclear if Larissa was titrated on a Respironics BiPAP Syncrony at 5/15, or if the 5/15 setting is an interim 'workable' measure for the ventilator she is currently using at night.

I had given some thought to sending my ResMed Adapt SV to Brazilian, but Larissa's EPAP/IPAP spread of 10cmH2O is greater than the VPAP Adapt SV's maximun EEP/(IPAP) spread of 6cmH2O. Although the Adapt SV most likely would have worked for Larissa (even with the seemingly constrained EEP/(IPAP) parameters) there was the issue of no mask currently available for the ResMed Adapt SV that would fit a 3 year old.

Brazilian,

I know you understand that we are in no way trying to interfere with Larissa's doctor's orders, or her care, or her therapy. it's the nature of forums/blogs that we discuss the points as they present themselves.

We are all happy for the opportunity to learn how an SV machine could hopefully give this child the support she needs, and we are thankful for the opportunity that you and Larissa's medical team have allowed us.

Please PM me your email address when you get a chance. Thanks!.

Banned

brazilian wrote:I have just phoned her doctor (Dr. Silvana Teotonio, +55-31-9973-7404), and told her the news, and send her an email with all information you posted.

Can you also ask:

1. Specifically, what machine and settings are being used to provide her nocturnal ventilation presently;

2. What mask or other interface is being used; or, alternatively;

3. Does she presently have a tracheostomy (can't see behind the candy package)?

SAG

Hi, SAG! Thanks for your interest!

I´ve just phoned Dr. Silvana again at her home right now, and forwarded her your questions.

1. Larissa is presently using the ICU mechanical ventilator, on a bi-level mode, so it works like a BiPAP, (so I was told by her). Dr. Silvana will be tomorrow morning at the hospital again, and will email me all details (machine model & settings)

2. She uses a nasal mask, which was donated by a charity institution.

3. She does not have a tracheostomy.

Thanks for your concern!

From what I can gather with my understanding of Portugese (which is "nada"), it would seem that a significant portion of Laryssa's problem is the central hypoventilation from some neurological deficit. It is unlikely that even the most extreme OSA, by itself, would result in cardio-pulmonary arrest. The central hypoventilation causes high levels of CO2, and often, a trigger such as pneumonia creates enough respiratory insufficiency to tip the fragile balance and cause CP arrest. The prescribed fixed-level BiPAP keeps the CO2 down to tolerable levels.

Not that I think Dr. Silvana needs this point of explanation, but the suggestions of dsm:

dsm wrote:Larissa would more than likely want & benefit from ramp (which is available)

dsm wrote:I would probably try Larissa as follows
epap=5
IpapMin=10
IpapMax=20

dsm wrote:A gap of 10 CMS on such a young child is going to be a bit hard for her to cope with whereas setting IpapMin to 10 will be much easier, then when she is asleep the machine will lift the CMS if it needs to.

might not be appropriate. Starting out with reduced pressures either by ramp or reduced IPAPMin would only serve to create an increase of CO2.

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.

BiPAP Synchrony has the adjustable Rise Time, and there is an enhanced version called BiPAP AVAPS which can guarantee the necessary volume that Laryssa may need.

Now I'm kinda guessing at some of this, cause without seeing the PSG results it's impossible to figure out the dominate component and what the plan of attack should be. If it was composed principally of central apnea, then ASV might be appropriate (although I don't know anyone who's tried ASV in children). If it's a mix of obstructive and central apneas, again, ASV could help (but also again, does CompSAS exist in children?). But if the principal component is central hypoventilation, then maybe less technology is better, and the Synchrony or AVAPS might be the better choice. And elevated CO2 is pretty much a contraindication to ASV.

Perhaps it might be a good idea to ask Dr. Silvana how she wants to plan her attack, and if necessary, maybe exchange machines, if that's what's needed and Banned could do this.

Regardless, I do not mean any of this to downplay the very charitable gesture that Banned has done.

But stop wingin' the dials around anyway.

SAG

SAG,

I appreciate your input - I think it is going to be a lot more useful than my amateur contributions but I am also confident that Larissa's doc along with the feedback provided (such as your comments) will do what is best for Larissa.

The nice thing about the Biap AutoSV is it can be set up just as a Bilevel S/T and with adjustable rise time. That is a reason I believe it offers multiple choices.

I am also aware that the Synchrony is a special version of the Bipap family.

I too believe banned has made a remarkably generous contribution in regard to this donation. Of all the machines someone could donate, this seems to me to be the most flexible.

DSM

PS I agree we should be careful wingin' other peoples dials, but this forum is full of people who have dared to wing their own - me included.