Implications of turning machine off & continuing to sleep?

ozij · Post by **ozij** » Sun Sep 11, 2011 11:13 pm

SleepingUgly wrote:He is on a nasal mask with chin strap, not a ffm. I'm feeling a like less stressed as it hasn't again since, so in a month it's only happened once. I've reviewed with him how to check that it's on. Hopefully it won't happen again. Thanks everyone!

My comment wat not meant for you, SU - Ibut for any unsuspecting person who may think there was reason to take Avi's post seriously. I know your son's setup.

MidnightOwl · Post by **MidnightOwl** » Mon Sep 12, 2011 1:44 am

SleepingUgly,

A few thoughts.

I used a chin strap for awhile. I absolutely could breathe through my mouth while wearing it. (Far too well, in fact.) It kept my jaw from dropping open but it still allowed my lips to open wide enough to get as much air as I needed. Even when the chinstrap worked, it worked because I had no reason to open my lips because I was getting all the air I needed from the CPAP. I suspect the fact that he slept for hours with the machine off is evidence that he also was breathing just fine. Also, most people will wake up if they aren't getting enough air. That is much of the problem with OSA. It's also why we don't all suffocate on our pillows before we grow up. Is there any special reason he wouldn't?

My machine (respironics m series) has an automatic start that is unrelated to auto off. However if his breathing couldn't be detected reliably for an APAP machine it probably can't be for the auto on feature either.

What about rigging some kind of alarm that went off in HIS room if the machine goes off? Ideally it would be mobile so that you could temporarily move it to yours if you had some reason to be concerned for a few nights.

It has to be scary dealing with this for your child. But I've been reading your posts for a long time now and he couldn't have picked a better parent to help him manage this.

Midnightowl

SleepingUgly · Post by **SleepingUgly** » Mon Sep 12, 2011 9:34 am

MidnightOwl wrote:Also, most people will wake up if they aren't getting enough air. That is much of the problem with OSA. It's also why we don't all suffocate on our pillows before we grow up. Is there any special reason he wouldn't?

No, he doesn't have any medical issues other than this.

What about rigging some kind of alarm that went off in HIS room if the machine goes off? Ideally it would be mobile so that you could temporarily move it to yours if you had some reason to be concerned for a few nights.

We've thought about it, but as I mentioned, we can't afford to have all the sleep disruption for routine awakenings. The alarm would wake his sister, me, and my husband, as well as wake him up considerable more than he would awaken to just get a drink from his nightstand and go back to sleep. So far, the data would suggest that only a minute fraction of the time would it be because he turned the machine off and continued to sleep with the machine off. The greater risk is electricity going out, and for that we have a UPS on his CPAP, plus I will hear my noise machines go off and will go check on him and make sure the UPS is working (it hasn't needed to come on yet). He is waking us with issues a few nights a week as it is. He is a highly intelligent child with good dexterity, so it's not like we're dealing with a child with motor or cognitive problems.

In short, I'm worried about this, but I think the options mentioned so far are not viable for a variety of reasons. I'll keep my eye on the data and make sure this doesn't happen again. If it does, I'll have to revisit the options.

It has to be scary dealing with this for your child. But I've been reading your posts for a long time now and he couldn't have picked a better parent to help him manage this.

Thanks for the vote of confidence! I'm not happy that I have to be on CPAP (especially since I can't get to my prescribed pressure, which is very frustrating to me! ), but if I was starting with him from a place of NO knowledge about CPAP, I would be 100 times more overwhelmed than I am. It's upsetting enough when he's leaking or complaining of a stomach ache, but if I didn't have the first clue about leaks, mask fitting, running/cleaning the machine, putting masks back together, available accessories such as chinstraps & hose management, understanding the data, etc., this would be beyond overwhelming.

Tip10 · Post by **Tip10** » Mon Sep 12, 2011 10:24 am

SleepingUgly wrote:He is 8-years-old, can build incredible Lego structures with the tiny little Legos and has excellent fine motor skills. Every morning he turns off the machine, detaches the hose from the mask, unclips the mask and removes the headgear and the chin strap in the exact fashion we've told him to do it (e.g., not undoing the velcro). He's not a very young child or one with poor dexterity, so he most certainly can do this.

SU -- kudos to you and son -- you both are taking rational, logical approaches to this. He's definitely a trooper.

Only suggestion I can offer is to help him develop the habit of checking flow just as he settles down. You already have him developing other good habits surrounding his therapy -- talk to him about using the vent to verify that the machine is on -- every time he snuggles down on his pillow he should reach up and make sure he's venting. Make it part of your bedtime routine -- mask up, chin strap on, etc., snuggle in, CHECK FLOW, go to sleep. Work with him on the same for drinks and such -- chin strap down, drink, chin strap back in place, snuggle down, CHECK FLOW, go to sleep.

Humans are definitely creatures of habit -- once he develops the habit of checking it'll be come second nature -- he'll check and his sub-conscious will deal with it if he finds it "not right". He and mom can both sleep better.

Basically last thing I do before going to sleep is reach up and stick my hand in front of the vents top make sure there's flow, if I wake in the night I do the same thing -- I've gotten used to the pressure -- for the most part without checking I'm not sure I can tell you if the machine is running or not. I'm guessing I probably could if it wasn't but to be perfectly honest I'm not so sure. I do know, however, that if I wake for any reason I check. Its become habit.

avi123 · Post by **avi123** » Mon Sep 12, 2011 10:36 am

[quote="SleepingUgly]

What about rigging some kind of alarm that went off in HIS room if the machine goes off? Ideally it would be mobile so that you could temporarily move it to yours if you had some reason to be concerned for a few nights.

You could use this gadget while plugged into a multi- socket that the CPAP is plugged to it also, to sound an alarm if there is an electrical stoppage or the cable plug is pulled out from the wall socket:

http://www.amazon.com/Reliance-Controls ... 339&sr=8-1

But to get a device to sound an alarm if the CPAP stopped blowing air, you need to contact the mfg.

SleepingUgly · Post by **SleepingUgly** » Mon Sep 12, 2011 10:40 am

Tip10, thanks for the great tip! He does know that he can put his hand in front of his face to check flow, but it's a great idea to make it part of our routine. We already have these steps done religiously, in order: chinstrap on, mask on, connect hose, power on, reseat mask, lay on back and check for leaks, lay on side and check for leaks, lay on other side and check for leaks, done. So it would be easy to insert "check flow" in the step just after we power it on. Then we'll remind him that if he turns the machine off for any reason, when he powers it on, he checks flow again.

Thanks!

SleepingUgly · Post by **SleepingUgly** » Mon Sep 12, 2011 9:45 pm

Sigh.

My husband called me into our son's room because there was condensation in his mask. The machine was off.

So let's talk Smart Start on a Resmed S9 Autoset again...

Wanting safety guarantees... Obviously I'm afraid of it stopping when it shouldn't, or not starting when it should. Can anyone to speak to just how little breath would make the machine to turn off? Obviously the machine can't turn off during an apnea, so what kind of breath stoppage does it consider to be a real indicator to turn off? AND just how little breathing does it take to turn it on?

I'm trying to think this through... We could turn the machine on at night and then tape a dixie cup over the on/off button as a reminder to him not to touch it until he gets used to the new system. We'd have to instruct him to unhook the hose to drink (or the machine would turn on while he's drinking--ugh), and to unhook the hose again in the morning when he gets up. The problems I foresee are: (1) he might forget to rehook up the hose and again go back to sleep with the machine off (could this really happen? I'll have to try to wear a nasal mask with the hose disconnected to get a feel for whether the sensation would be so obviously wrong that he'd recognize it) and (2) we'd see large leaks in the data and we wouldn't know if they were real leaks or not (they would be followed by the machine being turned off, which would be a clue, but only if we really can keep him off the on/off button).

Anyone foresee any other issues?

Might I add one more:

How am I supposed to go to sleep now?! As if I don't have enough problems with my sleep. One more: Sigh.

SleepingUgly · Post by **SleepingUgly** » Mon Sep 12, 2011 10:13 pm

I found this on another forum, which is a bit worrisome (if for no other reason than sleep disruption):

Well, after nearly 5 months, I can tell you what is causing my S9 AutoSet to turn off in the middle of the night for no apparent reason...

It really didn't happen that much lately, until this month... I've had a ton of work to do lately and was very busy, so maybe that contributed to my increased leak issue... (I hadn't cleaned my mask lately, so that didn't help)... but the machine turned off twice this month, once, at about 4:00 AM, and the second time at about 6:30 AM (on a different day).

At first I thought it was a power voltage drop (again), but I'm convinced now that this is not what's causing the shutoff.

I hadn't noticed this before when analyzing my ResScan charts, but I decided this time, I'm really going to pour over them, since I knew exactly what time these events happened. I had to adjust the time on the detailed chart data to a 10 minute span... these events weren't noticeable when I looked at the more broad time periods.

First of all, I need to tell you that my S9 AutoSet is set for Auto On/Off, which means that it turns itself ON or OFF in response to you breathing in, or if it senses that you took your mask off.

ResScan was showing that in each incident, I had a leak that progressively got worse over a 5-10 minute period until the leak numbers literally went "off the chart"... then, my S9 AutoSet "thought" that the leak was so bad, I must have removed my CPAP mask, SO, it shut off the pressure, according to the Auto On/Off setting. The machine would come back on a few seconds later (about 10 seconds, after I woke up due to not being able to breathe (no pressure to the mask) and after I re-adjusted my leaking mask.

So, as a test, I decided to turn off the Auto On/Off option to see what would happen (so that the machine continuously runs, whether or not your mask is on, off or leaking at all).

And.... sure enough... I have had no issues thus far, the machine never turns off and (get this), my AHI has dropped a full point, from an average of 2.2 down to an average 1.1 AHI... amazing.

On further analysis, I reviewed other nights on ResScan... not just the nights where I knew that the machine had turned off. And guess what?!? These large leak/turn off events were happening a lot more frequently that I had thought... nearly 4-5 times each night on most nights! But I don't remember waking up during these shut-offs at all. So maybe this is why I haven't been able to get my AHI down below 2.1 thus far! duh!
h-jeez:

http://s7.zetaboards.com/Apnea_Board/topic/8444619/1/

rested gal · Post by **rested gal** » Tue Sep 13, 2011 12:12 am

SleepingUgly wrote: Sigh.

My husband called me into our son's room because there was condensation in his mask. The machine was off.

So let's talk Smart Start on a Resmed S9 Autoset again...

Wanting safety guarantees... Obviously I'm afraid of it stopping when it shouldn't, or not starting when it should. Can anyone to speak to just how little breath would make the machine to turn off? Obviously the machine can't turn off during an apnea, so what kind of breath stoppage does it consider to be a real indicator to turn off? AND just how little breathing does it take to turn it on?

Well, I don't have any "guarantees" to offer.... but here are my thoughts. I don't know how little breathing it takes for the machine to turn off. I really can't imagine it turning off with a person attached, no matter how light the breathing got. At any rate, it sure doesn't take much breath for it to turn on, in my experience. While putting my nasal pillows on and tying the extra cradling strap (takes me just a few seconds to tie that) I usually hold my breath so the machine won't start while I'm "masking up."

SleepingUgly wrote:I'm trying to think this through... We could turn the machine on at night and then tape a dixie cup over the on/off button as a reminder to him not to touch it until he gets used to the new system. We'd have to instruct him to unhook the hose to drink (or the machine would turn on while he's drinking--ugh), and to unhook the hose again in the morning when he gets up. The problems I foresee are: (1) he might forget to rehook up the hose and again go back to sleep with the machine off (could this really happen?

I think I'd try going about the "sip of water" during the night a different way. Perhaps one of these ways:

1. Put a long, bendable straw in the sport cup. Let him try some daytime practice sessions of taking a small sip of water with the machine going, mask and hose in place...not removing anything or turning the machine off. You might find that he can swallow easily with the machine still blowing. We all close off our airway when we swallow, so it might be that he'd have no problem doing that even with the cpap still on. Perhaps there's no need to turn the machine off at all to take a sip of water. I'd suggest using a straw so he doesn't have to tip his head back at all the way he'd have to if sipping through the bottle's spout.

or

2. Is it absolutely, positively necessary that he take a sip (or sips) of water during the night? I know he's used to doing that, and probably wants to continue doing that ...but is it something that must be continued? He seems to be very intelligent and very cooperative about all this "cpap stuff." Perhaps he would understand the need for a new water habit at night -- one last big slug of water just before putting the mask on, and then no more water until time to get up in the morning? No water available on the nightstand at all. I know, I know... I'd hate to toss in a new rule like that into all the new stuff he's being so good about doing now, but if "sipping through a straw with machine blowing" isn't an option or can't be accomplished, maybe "no sipping water during the night" would be a good idea?

SleepingUgly wrote:I'll have to try to wear a nasal mask with the hose disconnected to get a feel for whether the sensation would be so obviously wrong that he'd recognize it)

Dunno. What might, or might not be obvious to you could feel quite different to him -- especially if waking up in the middle of the night. Remember...you have "the princess and the pea" sensitivity. That won't necessarily apply to him.

SleepingUgly wrote: and (2) we'd see large leaks in the data and we wouldn't know if they were real leaks or not (they would be followed by the machine being turned off, which would be a clue, but only if we really can keep him off the on/off button).

Simpler (imho) would be to let him try some straw-sipping with machine going. Might be very easy for him to do. Or... safest of all -- no more sipping water during the night.

Guest · Post by **Guest** » Tue Sep 13, 2011 7:35 am

rested gal wrote:here are my thoughts. I don't know how little breathing it takes for the machine to turn off.

Uhhhh, I'm laughing here. That would be an apnea. The machine is designed to treat those.

Honestly, where did you all get the idea that when you stop breathing, smartstart/stop turns the machine OFF?

SleepingUgly · Post by **SleepingUgly** » Tue Sep 13, 2011 12:52 pm

Thanks, RG. The sipping water started with CPAP. I think it's making his mouth dry. He didn't have a bottle of water by his bed before that, although he did at times probably get up and go to the bathroom to get water. The bottle was so that he wouldn't have to de-mask to drink something, or even detach from the machine.

I tried sipping water with a straw with the machine on, and it does something strange to my ears. On the other hand, if I turn the machine off, it gives me a few seconds to drink before it turns back on. I'm wondering if the safest, best alternative is to continue using the on/off button while having SmartStart enabled. We can still train him to check for venting, but even if he forgets, the machine should start on its own. This way we'd have everything we have now, but Smart Start as a backup. The only problem I can foresee is that it's going to be hard for him to call out to us at night if he has a problem without removing the mask, which we'd rather he not. Not impossible, just harder with air coming through. He could keep hitting the off button, obviously, and call out during the time it's off before Smart Start turns it back on.

Am I missing any other issues?

rested gal · Post by **rested gal** » Tue Sep 13, 2011 12:53 pm

Guest wrote:
rested gal wrote:here are my thoughts. I don't know how little breathing it takes for the machine to turn off.
Uhhhh, I'm laughing here. That would be an apnea. The machine is designed to treat those.

Honestly, where did you all get the idea that when you stop breathing, smartstart/stop turns the machine OFF?

Laugh all you want. But next time you lift a quote out, think about including a little context. Uhhhh, like the very next sentence -- the one I've emphasized in bold here to make it a little more noticeable:

I wrote:I don't know how little breathing it takes for the machine to turn off. I really can't imagine it turning off with a person attached, no matter how light the breathing got.

I do understand your point, Guest. I agree. I don't think having SmartStart enabled would turn the machine off due to a child breathing extremely lightly -- but I don't know that for a fact.

Might be a good question for SU to call ResMed directly and ask the person who answers to ask the machine design department. The designers may laugh, too. Or not. And even then she might not get a definitive answer, but rather a CYA type of answer.

SleepingUgly wrote:I'm afraid the machine won't detect his breathing and will turn off. It's a possibly irrational fear based on the doctor telling us never to use APAP with young children, as children have died on APAP because the machine doesn't reliably detect their breathing.

The children were likely considerably younger than her ten year old son, and/or possibly had a great deal more wrong with them than just OSA. And different "APAPs" have different design algorithms. I'd not be worried one bit about enabling SmartStart for him. But I'm not a mother, and that's not my son.

rested gal · Post by **rested gal** » Tue Sep 13, 2011 1:07 pm

SleepingUgly wrote:On the other hand, if I turn the machine off, it gives me a few seconds to drink before it turns back on.

Since we hold our breath while swallowing, that's why the machine doesn't turn on again. It won't, even if it took several swallows before you're finished drinking and start breathing again.

SleepingUgly wrote:I'm wondering if the safest, best alternative is to continue using the on/off button while having SmartStart enabled. We can still train him to check for venting, but even if he forgets, the machine should start on its own. This way we'd have everything we have now, but Smart Start as a backup.

Sounds like a good idea.

SleepingUgly · Post by **SleepingUgly** » Tue Sep 13, 2011 1:19 pm

Minor point...he's 8, not 10.

Tip10 · Post by **Tip10** » Tue Sep 13, 2011 1:50 pm

SleepingUgly wrote:The only problem I can foresee is that it's going to be hard for him to call out to us at night if he has a problem without removing the mask, which we'd rather he not. Not impossible, just harder with air coming through. He could keep hitting the off button, obviously, and call out during the time it's off before Smart Start turns it back on.

SU, want an off the wall suggestion -- get him a duck call (or something similar). I'd not use a whistle because it'd likely be too shrill and would end up waking everybody around but the timber of a duck call is such that it might be enough to get a mom up (I'm a parent and was a single parent for a long time -- I understand how attuned we can be to our kid's noises -- even from a deep sleep) without waking the entire household. Duck calls are usually only a few bucks in the sporting goods sections and should fit the bill -- hopefully a few quacks would get your attention.

As for the drink thing -- perhaps something along this line might allow him a small squirt of water to relieve the dryness without causing issues with either having to turn it off or opening up to take a drink. http://www.amazon.com/Mueller-Sports-Qu ... 150&sr=8-4

Implications of turning machine off & continuing to sleep?

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