My son the trooper

[SleepingUgly]

I thought it may be therapeutic for me to post about my son. As some of you know, he is 8 years old and was put on CPAP in August. He initially was doing well, wearing it all night, albeit with a host of issues, such as ill-fitting masks, leaks, etc. We've run into problems lately, and as a problem-solver type of person, it's very frustrating to me that I can't get a handle on these issues. In fact, I'm not even entirely sure what the issues are (more on this below). If I were someone who was successfully using CPAP at my prescribed pressures, I think I'd feel more optimistic. I have much better access to information about what is going awry with my own CPAP therapy, and yet I can't solve my problems; therefore, lacking information as I am about what is going on with him, I'm fearful that I won't be able to solve his.

Some of the most recent issues we've encountered include discomfort (chinstrap hurting, nose hurting), disconnecting the hose and continuing to sleep with the hose disconnected, and big gaps and small gaps in the data that call into question whether Smart Start/Stop is working right (is it turning off while he's still attached? Or not turning on when he reattaches the hose?) and questions about whether the machine/data is malfunctioning. He's had a few terrible nights of sleep and there are gaps all over in his data.

Last night we decided to check on him every 15-20 minutes to try to figure out what was going on. At one point the machine was on, but his sleep was very agitated. I came back 23 minutes too late later, and he had the hose disconnected but the mask still on. When I look at the data on his S9 Autoset, the flow went from looking OK to looking like hell during the time of the agitated sleep (yet the machine scored no events, not even FLs!), and then there is a gap, presumably from his disconnecting the hose right after I left the room.

We've been a bit hard on him about not using the CPAP all night (and there are times he clearly wasn't, like when we'd find him reading at 4am), and I feel guilty about that because I'm not sure the machine is even recording data properly or perhaps even providing air! Then there are nights he is clearly sleeping like s*** but he persists with the $#*&^%+# machine. He is such a trooper.

Last night at midnight I came in. He had just been up, complaining about a headache, and he put the headgear back on a bit wrong. I fixed it and he said to me: "I'm trying to wear the CPAP all night for 7 days in a row. Then I'm going to try to do it again for 7 days in a row for your birthday, as a present. I'm going to do that for everyone's birthday in the family."

[rosacer]

SleepingUgly, you have a very nice and brave kid; I wish he had no need to use a CPAP.

Have you thought at the possibility to make your son use another machine for a couple of days to see if the same situation arrives? Or could you make someone else use this machine for a couple of days to see if the person experiences a problem?

Maybe the machine is really malfunctioning. Another idea is to check again while he is sleeping but this time continuously; if the machine is doing a weir thing you can hopefully discover it. Or have you try to contact Resmed and explain the situation?

You will find the solution I'm sure.

Rosacer

[Madalot]

Bless your heart SU (and your son's too of course) --

I wish I had words of advice for you. Hopefully someone more knowledgeable than I will come along and offer some suggestions.

But you are so right -- your son is a trooper -- as are you.

And I have no doubt that your son will be successful - he sounds like such a darling.

[SleepyInIndy]

First, and most importantly, you son is a real trooper and deserves love, hugs, and praise for his attitude and effort.

Second, have you tried disabling the smart on/off? Have him manually start and stop the machine. That would eliminate at least that possibility. At 8 years old he should be able to press the switch himself.

You did not say what type of mask your son uses. If the nose is sore, perhaps the headgear is to tight?

You will find the answers.

John

[n0hardmask]

SleepingUgly, you have a very nice and brave kid; I wish he had no need to use a CPAP.
Have you thought at the possibility to make your son use another machine for a couple of days to see if the same situation arrives? Or could you make someone else use this machine for a couple of days to see if the person experiences a problem?
Maybe the machine is really malfunctioning. Another idea is to check again while he is sleeping but this time continuously; if the machine is doing a weir thing you can hopefully discover it. Or have you try to contact Resmed and explain the situation?
You will find the solution I'm sure.
Rosacer

SU, I wholeheartedly second rosacer's sentiments and advice on swapping machines if possible. Good suggestion, IMO. Personally, I can't offer any technical advice, but as the father of two near-30-y.o. 'kids' I suggest that what Y'all are enduring is a bonding force.

Trooper's response indicates he is sincerely making the effort, and he wants to honor your wishes that he use the machine. It takes many years, decades generally, to see the results of efforts in upbringing 'our kids'. Some of the most important events include challenges that force us to either work together of divide us. So as goofy as it may seem now, you may some time later look back and realize this was a time of closeness between you and him.

I also wish you success/luck in finding answers to the challenge you both face. God be with you. earl

[robysue]

SU,

First, like others, I want to wish both your son and you the best of luck in your struggles. You really do have a trooper there: It's a strong positive sign that he wants to wear the mask for seven nights in a row for your birthday present.

Last night we decided to check on him every 15-20 minutes to try to figure out what was going on. At one point the machine was on, but his sleep was very agitated. I came back 23 minutes too late later, and he had the hose disconnected but the mask still on. When I look at the data on his S9 Autoset, the flow went from looking OK to looking like hell during the time of the agitated sleep (yet the machine scored no events, not even FLs!), and then there is a gap, presumably from his disconnecting the hose right after I left the room.

Perhaps posting his data might help others give you some additional troubleshooting ideas?

And I also second the idea of possibly switching machines with your son for a night or two so that you might be able to better determine whether there's a problem with the machine itself.

[SleepingUgly]

Thanks to everyone for the support. It means a lot to me.

SleepInIndy, we enabled the Smart Start/Stop after we found that he was forgetting to turn the machine back on in the middle of the night and sleeping with the mask on and the machine off. Course we have a similar problem now, potentially. Although of the two evils, I'd rather have him with the mask on and the hose disconnected than the hose connected to a machine that's off. Sigh.

I am starting to think that there may be user issues (e.g., disconnecting the hose and not reconnecting--but why?) and possibly machine/data issues. It's a good idea to put him on my S9 for a few days and see what happens.

Does anyone know how reliably the machine should go on and stay on using Smart Start/Stop? Is it even possible to be alive and breathing, even a small kid, and not have the machine turn on and stay on in response to the breathing?

[Kody]

Boy his heartfelt comment to you shows he is really trying to do this. Sorry you guys are having so many issues. First thing I would would also want to make sure his machine is working normally. Never had one of these things, but what about one of those baby monitors? My machine makes a pretty good humming sound when it's on. What if you put one of those monitors right next to his machine so you guys would know by listening on your speaker if the machine was still on when he's asleep. Not sure if they are that sound sensitive or not, but just a thought. I hope you guys get all this straightened out, good luck.

[Uncle_Bob]

agitated sleep, data loss, disconnecting the tube etc etc all of a sudden could point towards a defective machine. I second what others have said in letting him try your S9. I'm not sure what he has right now but if its not an S9 he might not want to give you yours back

You both sound like troopers, wishing you all the best.

-UB

[chunkyfrog]

What a great kid!
We can all be proud of him.

[redjoe]

Last night at midnight I came in. He had just been up, complaining about a headache, and he put the headgear back on a bit wrong. I fixed it and he said to me: "I'm trying to wear the CPAP all night for 7 days in a row. Then I'm going to try to do it again for 7 days in a row for your birthday, as a present. I'm going to do that for everyone's birthday in the family."

What a sweet child. That had to melt your heart. I truly hope you can get things sorted out for him.

[DoriC]

Last night at midnight I came in. He had just been up, complaining about a headache, and he put the headgear back on a bit wrong. I fixed it and he said to me: "I'm trying to wear the CPAP all night for 7 days in a row. Then I'm going to try to do it again for 7 days in a row for your birthday, as a present. I'm going to do that for everyone's birthday in the family."

What a sweet child. That had to melt your heart. I truly hope you can get things sorted out for him.

So now you've gone and made this Grandma cry! Please give him a hug for me. If anyone can figure this out you will. Just a crazy thought, is there a way you can sleep during the day just once and then stay awake while he sleeps at night to observe exactly what he's doing? I hate to confess this but at the beginning I did this once or twice myself because I couldn't figure out what Mike was doing during the night to cause so many problems. I found he buried his mask into the pillow, or pushed arm way under the pillow dislodging mask, pulled covers over his head, twisted the hose under him, pulled his mask around causing leaks,slept on his back with his arm over the mask, and other things I can't remember. He never did touch the machine except when he was awake and knew what he was doing. It took time but I was able to eventually correct these things, of course he's not 8yrs old but does some of the same things at his age. I pray for him.

[Janknitz]

I don't know about the ResMed machines, but I can set the auto start on but leave the auto off off on the PRS1--that way it will turn on automatically, but I have to turn it off manually. There is even an alarm that will sound if the machine is running without the mask or a big leak, but I've never tried that feature. I don't know if your son's machine has that.

Maybe setting the machine up that way with a longer hose, so your son would have to get out of bed to turn the machine off will help?

My suspicion is that he is disconnecting the hose in his sleep--kids have all kinds of funny behaviors in their sleep that would be characterized as "sleep behavior disorder" in adults, but are probably more common and normal in kids.

Hang in there! He sounds like a wonderful kid and he's really trying hard. Give him a hug from me and tell him I think he's incredibly brave and wonderful.

[redjoe]

Bump

I really can't help with these issues, but I hope someone will.

[SleepingUgly]

I'm asking the DME for a new machine. I was in his room every 15 minutes until I went to bed, and there is missing data even from times I checked on him, as if the machine were off. I zeroed out the data on the machine and unplugged it and that didn't help. Hopefully I'll get it soon.