My son the trooper

Hi SU,

In regards to the mask problems, I know this is going to sound like a "duh" statement, but don't forget that he is a GROWING kid. The mask may fit differently because he has grown.

Lisa

LoneStar wrote:In regards to the mask problems, I know this is going to sound like a "duh" statement, but don't forget that he is a GROWING kid. The mask may fit differently because he has grown.

Right now he's on pillows. Our challenge is that he leaks through his mouth. The chinstrap doesn't keep him from puffing air out of his mouth.

He is blessed to have such a loving mom.

SU,

I find that my mouth breathing is positional. When I sleep on my side I have leaks and on my stomach none. At his age it will be natural for his system to fight the unnatural feeling of the mask and air. Has you son worn the mask while awake? He needs to get his body accustomed to it so it will be more comfortable for him.

Maybe the people that make the Pap Cap could make a smaller size for him or at least they could tell you how to modify a baseball cap that fits him into one. I understand that the Pap Cap holds the chin differently than a regular chin strap.

It would have been my next step to control mouth leaking if I hadn't been able to train myself to keep my tongue in the roof of my mouth.

Lisa

Sleepy Taz wrote: At his age it will be natural for his system to fight the unnatural feeling of the mask and air. Has you son worn the mask while awake? He needs to get his body accustomed to it so it will be more comfortable for him.

Actually, kids seem to adjust to CPAP better than adults. He was doing OK for awhile with CPAP, even initially, until lately. But now I wonder if some of what I thought was him turning the machine off is either the machine turning off or missing data. But there do seem to be more discomfort issues lately. If we think we have it bad in terms of mask choices and chinstraps, a kid has much less to choose from!

It required a custom-fitted oral device made by a dentist for me to be able to learn to sleep with my mouth closed.

(On a side note, my wife has commented that she wished she knew of a dentist who could fit me with a similar device that would accomplish much the same thing for when I'm awake. Ba-dum-bump. Now back on topic . . .)

The dentist took an impression of my upper teeth and my lower teeth and then made a plastic mold that kept my jaw closed, and I used that in conjunction with PAP therapy.

Insurance can be a big problem as far as reimbursement, but a dentist might be convinced to think outside the box, to go out of his or her way to be of help, at a reduced price, to a minor using CPAP. A cheaper, non-adjustable form of oral device should be used, not a fancy-shmantzy adustable one, since it would be for temporary use along with CPAP until the child learned to sleep with mouth closed. Moving the jaw forward would not be the priority in this instance, so technically it would not be a mandibular advancement device with this application of the technology.

Maybe a stupid idea, but I throw it out there anyway.

These are all good ideas. We haven't even reached the point where we are comfortable considering an Ultimate Chinstrap situation where it holds his jaw up AND covers his mouth, mainly because it requires releases velcro in two places to get it off. So I don't think we'd be comfortable occluding his mouth, even if the issue of losing baby teeth, growing permanent teeth, etc. didn't confound the situation.

Now here's another grandma you've gone and made cry. Your son is so special,and so are you for all you are doing to help him. I wish I could help you but I can't,I will pray for you though because I know you will figure this out with God's
help.Sending you prayers and love.

Last night we used the new machine (both the CPAP part and humidifier), new SD card, old Climateline, old humidifier tub. ResScan shows no gaps in the data other than the ones that should be there! BUT... I've lost the flow curve!! Instead of the sinusoidal flow curve (sometimes less than sinusoidal), there is just a straight line like a ruler across the screen. I'm so frustrated. I'll switch to a new Climateline, although I can't imagine that's the problem. He's on ResScan 3.10.

Speaking of data problems... Because ResScan 3.14 is needed to read VPAP data, and mine wouldn't work on my 64 bit computer (but works fine on my husband's), my data is in 3.14. On the statistics tab of my data, I can always see for IPAP and EPAP statistics for median, 95th percentile, and maximum. Today those indices disappeared from the Statistics tab--just for today's data. I can still see those on yesterday and previous days, just not today. I didn't change anything on that machine, so again, what the hell?!

My tired brain can't handle all these technically difficulties.

2126279217

SU,

I cannot help in regards to the technical side of all of this but I do want add to what Kody stated earlier about the monitor. We use a “baby monitor” with our youngest son to hear when he alarms his oximeter at night. The monitor that we have is very sensitive and picks up and amplifies the oxygen concentrator very well even though it is at the other end of the room from the monitor. If you were to put one by the head of his bed it might very well pick up the sound of the rushing air from him disconnecting his hose. Sorry that I cannot be of more help but keep up the wonderful work that you are doing! Your son is so blessed to have such a great advocate on his side!

You and your son are in our thoughts.

rocklin wrote:2126279217

Maybe you've mentioned this, Rocklin', but why don't you sleep at night?

momofthree wrote:We use a “baby monitor” with our youngest son to hear when he alarms his oximeter at night. The monitor that we have is very sensitive and picks up and amplifies the oxygen concentrator very well even though it is at the other end of the room from the monitor. If you were to put one by the head of his bed it might very well pick up the sound of the rushing air from him disconnecting his hose. Sorry that I cannot be of more help but keep up the wonderful work that you are doing! Your son is so blessed to have such a great advocate on his side!

We do have a baby monitor in his room, although not that close to his bed. I think the CPAP is too quiet to hear, but if we disabled Smart Start and he disconnected the hose, the whooshing air would be louder. Right now we're focused on the missing data piece--to make sure that the machine is functioning properly with Smart Start on. If it turns out that Smart Start is disabling on him, then we'll have to consider just using the on/off button, in which case we'll have to put a dixie cup over it to remind him not to touch. I hope we won't have to do that. We had no gaps in the data when we first started using Smart Start, so I hope that means that there was malfunctioning of the machine, and now that we have a new machine, it won't be an issue.

Thanks for your concern!

(Edited to remove the stupidity)

SleepingUgly wrote: Maybe you've mentioned this, Rocklin', but why don't you sleep at night?

Bad dreams.