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MVFinVA

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Lost a loved one
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My PALS received his Bipap machine yesterday. It is a Philips "Dream Station" Bipap S/T. It is from the VA, so we have added layers of admin when dealing with info etc. so I thought I'd ask here first. The respiratory tech who brought it said my PALS is to wear it at night only right now. After reading on here about the difficulty of some PALS to adjust, I was very pleasantly surprised that my PALS wore it all night, and is still wearing it. He has FTD also.

I slept lightly, anticipating problems. For most of the night the Bipap was very quiet and I could hear a gentle, rhythmic breathing. About 5:30 this morning it got VERY loud. It sounded like a continuous blowing, although if I listened carefully I could differentiate in and out. It would go like this for 1 - 1 1/2 minutes, then quiet down for 15-20 seconds(i timed it) then get loud again. It went on like this for about an hour. My PALS wakened when I gave him a tube feeding and now is dozing. The machine is quiet again.

Could somebody provide some insight as to what was happening, remembering all of this Bipap lingo is still Greek to me?:) My PALS just got his feeding tube two weeks ago, so I am flooded with new info to learn!

Thanks in advance,
Mary
 
Could be the mask is leaking when your PALS is sleeping in a certain position. Also, check the straps, they can't be too tight or too loose. My wife uses her mask all the time and this happens quite often. Over time the cushion will need to be replaced as they loose conformance.
 
I too use my bipap at night with a full faced mask, and I have noticed that when I move my head around, the mask will move slightly and there will be some air leak. Some leak is ok as long as it doesn't move and he is not getting enough air. Our RT says that some air leak is ok, comfort becomes a more important issue. Another issue is watching the bridge of the nose for sores. The mask can cause pressure sores, but there are pads to help with that also, we use a gel pad called gecko nasal pad by ResMed and something should be available from the bipap providers.

There is one other noise that I can think it might be. Sometimes when we need to unplug the machine, the internal fans will turn on to cool the batteries or components of the machine. There does not seem to be any certain time frame that the fan will run. We have two bipaps and they both do the same thing. The fans will come on other times also, it just happens every time we plug and unplug the thing.
 
Thanks Larry and Waldo. I don't think it's a leak, because it would be quiet for a short while before it resumed loudly, and my PALS wasn't moving at all. I also heard what a leak sounds like when the RT was adjusting the mask. I think it was something with the way he was breathing.

I'll check the fans if I hear it again
 
The fan usually runs when one or both batteries are discharged and the power supply is working harder to recharge them. The display should show the batteries are only partially charged.
 
Besides the fans, the noise could also be an increase in the pressure delivered by the machine, related to the target volume set. When PALS are sleeping more deeply, that is when the need for higher pressure can be greatest. I would also check the hose connections and that all machine filters are installed. And if you enable the detail view on the machine, which I always recommend anyway, you can take a look at the screen if/when the noise recurs to check the hypothesis that it's the pressure ramping up.
 
Thanks Larry and Laurie. The machine doesn't have batteries so I'm thinking it is my husband is sleeping more deeply. I have noticed a different, louder breathing pattern pre-bipap sometimes in the early morning. I'll get out the manual and see if I can figure out how to enable the detail view on the machine.
 
Basically, when the machine is not blowing air, you hold down the alarm button and down arrow until you hear a beep, then select “Settings and Alarms.” Then go to page 5 in the attached and follow the directions.

Once you have changed access to Full, you don’t have to do it again. Same for Detailed View and other settings. So after you’ve done those things, you just do the alarm/down arrow thing to modify other settings, at any time.

Different models vary slightly; let me know if you have questions. If he needs better settings at any point (which the details on the screen can help you see, besides how he feels), I can help you tweak them.

Best,
Laurie
 

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Thanks Laurie. It turns out it WAS leaking. So we are trying to get a handle on getting the mask on to prevent leaks but not hurt his nose. My PALS bipap is a Respironics Dream Station. When it is going the "My Info" screen has a box labeled "Leak." If the hose is unconnected to the face mask it says 100, and when connected a lower number, usually 22-30. I am assuming that is the percent of air leakage? No matter how I tighten or adjust the mask I can never get it below 22. I don't hear any leaks around his mask or anywhere else.

My PALS has been tolerating the bipap very well and wears it between 9-12 hours a night. But maybe in my zeal to stop leaks I had it too tight. He now has a red spot on the bridge of his nose that he says hurts. I put neosporin on it during the day and nothing else, letting it air out. I ordered a Gecko nose gel pad. I am cleaning the mask daily with CPAP wipes.

So I have two questions: 1.Is the goal 0% leakage, or is there a small amount of leakage that is okay? And 2. Any suggestions to help heal the nose and prevent this in the future?

Thanks,
Mary
 
A small leak is normal, and preferred to "too tight," as you have seen. We sometimes used "gentle paper tape" or "Transpore" tape on the bridge, to compensate, when wearing the mask. We also tried/made various cloth liners for the inside, but you still will want something specific to the bridge now that it's compromised.

Grapeseed extract ointment may help, but noses are kind of individual. Be guided by how his nose responds, and make sure it's clean, oil-free and dry before applying anything.
 
Thanks Laurie. Since he just began the bipap this week I thought maybe he could go without for a night or two, with his head elevated, so the nose can heal. Then we will be extra careful to get the right balance of comfortable fit with only small leaks. It seems with ALS we are always on a learning curve!
 
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