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Jellycat

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So my mum was discharged after an overnight trial on bipap which went very well. 4 days on and for tonight at least we have abandoned the machine. We've spent the last hour or so on the cough assist & suction, hoovering up all I can describe as thick chunks of gunk. Well, many of you know the drill. Not sure if we're on a bad night or if the bipap is thickening the saliva. Any tips from bulbarians? On the up side she is looking & feeling brighter after using bipap.

Sending online hugs to all pals & cals awake in the dead of night.
 
I sure know about the Bipap drying up the throat gunk. It doesn't seem to natter what the bipap humidifier is set to, it can be raining insde my mask and my throat and mouth are still dry as a desert. When I wake up after a night on it I have to spend a half hour flushing and suctioning. The only advice I can give is to do a good mouth cleaning before bed and to take something to reduce saliva. Good luck, the bipap does help.
 
Thanks Barry. It helps just to know there are others out there struggling with the same stuff. Helps me hang in. Sounds like the bipap does dry despite humidifier-accounts for why neuro team also increased the amytriptylene on sending us home.
 
Amping up the humidity can help, but, as Barry said, it doesn't cure it. I sleep with the head of my bed elevated, not because of the gunk, just depressed breathing, however, elevation does help manage the buildup more than if I were laying flatter. If you put an insulator around her bipap hose to help keep it warm, (or tuck it under the blankets with her) it will enable her to have a higher humidity setting without as much rain out building in the mask and hose. Rain out is caused by the temperature contrast between humid air in bipap and colder air in room. ANY time my bipap is not in use, I have the hose hanging (over the curtain rod) and the mask taken off of it, laying "nose" side up, so that it can dry out as much as posible between uses.

Keep at it, for me, the bipap is the best. most effective aid for overall well-being.
 
Barry & Rose, thanks for your advice. Lots of cleaning & suctioning, together with keeping the bipap hose clean, dry and warm have really helped. So glad you're there. Happy new year. Avril
 
Rick has had a bipap for years and never gets dried from using it. It doesn't even have a humidifier on it. The specialist said that the humidifier causes problems and he recommended not even bothering with it. We keep the air humidified instead with a little machine that sits in our livingroom... it's like a vaporizer of sorts, but cold air. It puts out about 3 gallons a day. We have a gauge like a thermometer that measures the air for humidity and we keep it as close to 40-50 % as we can. We use it when the woodstove is heating our home. In the summer, we don't use it at all. As I said, Rick doesn't get dried out. He does have the morning congestion that ALS patients have. He just blows his nose for a little while each morning...........I suggest that you might be sleeping with your mouth open if you are getting dry. Try getting and using a chin strap to keep your mouth closed when you sleep. Rick uses his............ We have a pot of boiling water going on the woodstove all the time too, when it gets 10 degrees outside and the stove is cranking. If you have electric heat, know it also dries out the air. Dry air causes static in your clothing and your hair... that's one way to tell if you need humidity.
 
Marjorie, maybe it's just me and my weird face but yes my mouth is open ALL the time. The problem isn't so much my jaw hanging open, that could be cured with a chin strap, the problem with me is that even when my teeth are closed there is a gap in my lips of at least 1/2 inch. Short of taping my lips closed ( which I have tried but not while sleeping) there is no way to cure this. I use both a room humidifier which raises the room humidity to 45% and the bipap humidifier and still have an extremely dry mouth always. Bulbar ALS sucks!

Abril, glad to help.
 
In fact we did try it without the humidifier as initially the humidifier was malfunctioning. (thats another story). She found it gave her a sore throat using it without the humidifier. And yes, you're right, she does sleep with her mouth open. As the disease started in her voice & throat, nose blowing is now a very distant memory. Closing & opening her mouth is also an area of little muscle control. Usually drier is what we're after to deal with the saliva that can't be swallowed! Bipap just brought a new twist. Your humidification system sounds like it really works for you.
 
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