Choking on mucous

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Has this settled at all Bestfriends? been thinking of you
 
Thank you for checking 😍. Yes, it seems to have abated, thank God. We've had to really restrict his diet and fiddle around with the timing and types of liquids throughout the day, but so far it seems to be working.

I'm tentatively getting away for a much needed respite on the 5th, 6th, and 7th. I've only had 4 days off in 6 years, so I'm really looking forward to getting away. Wayne will be in the very capable hands of his caregiver. I hope and pray nothing goes wrong while I'm away and I can focus on relaxing.

Thanks again for checking in. ❤️❤️❤️
 
I'm so glad to hear things have settled!
That's really given you a good measuring stick though. You knew the dairy was connected, but this latest reaction has really given the final proof.
Now my advice for this respite - think of how you can make the most of every day and night!
That doesn't mean, can you party wildly, but how many things 'just for you to recharge' can you fit into that time?
That could focus around food, massage, exercise/outings, sleep opportunities, movies, seeing people, being alone.
Whatever your needs, see how much you can think about meeting them while you have this important time.
I cannot even slightly begin to imagine having been a CALS for that long - you truly deserve this time to recharge.
 
Omg, I just want to lie in, hang out with the dog, and maybe get a massage. I'm hoping I won't fret the whole time worrying if Wayne is OK. I guess I can tell myself that if there was something wrong, the caregiver would let me know. It's going to be chilly, but I'm still going to sit outside with the pup and star gaze each evening.

😊
 
Sounds perfect - get the massage booked.
Make sure you have some great food ready too - delish but healthy.
Perhaps you can make a clear plan with the caregiver - maybe they will agree to update you each morning and evening (not to early morning and not to late evening), and that if you hear nothing in between it means all is ok.
Promise you won't phone, but if you must check, just a text.
Evening star gazing sounds fantastic - there are some great phone apps about the stars that could be fun too.

Sounds like true respite to me!
 
Thank you @ALStrooper I'll definitely look for papaya. It seems difficult to find, though.
 
Look in the ethnic foods section of the grocery ("papaya nectar") or order on line. There are also tablets available as chewables or they could be ground into a smoothie, depending on what he can tolerate.

I would try both pineapple and papaya, because they work differently for different people.

I hope you are having a restful time!
 
darn wish I could post you one, papayas grow like crazy here
 
I'm on my respite now in a teeny place called Aguanga, CA. I took the pup to La Jolla Shores today and have really done little else. It's been lovely.
 
I was diagnosed with ALS in April 2019. I have to echo Igelb's comments about humidification.

Prior to using a humidifier, I had 4 episodes of mucus congestion over 3 months. I passed out during 2 episodes (mucus syncope) and required Paramedic and ER support for 3 of the 4 episodes. When the last episode occurred this past August, I went to a different ER facility than my provider. Thank goodness for that decision because the staff included a respiratory team. They connected my BIPAP to a humidifier, provided inline inhaler/nebulizer treatment with my ventilator and also provided chest compression therapy. These treatments helped to thin mucus secretions and break up mucus plugs.

After I was discharged, I obtained the humidifier right away and started the inhaler treatment and pneumatic chest vest 2-3 months later. I had always used cough assist and suction devices, but they eliminated mucus much better after I started the other respiratory treatments and therapy. I also have a PEG tube and take Jevity, Ensure and cream soup. So, far, I haven't experienced mucus congestion since August and I hope I never experience mucus syncope (loss of consciousness) again.
 
Oh wow, that's a scary story but with some really good advice. My husband's bipap has a built in humidifier, but his trilogy does not. Our home sits at a consistent 58% humidity, but when we go back to Calgary (our other home), it's so dry with a near 0% humidity. What is the inline inhaler/nebulizer? Can one buy it or does it need to be prescribed? Would a plug-in humidifier work in the room he is in?

Btw, my husband takes 600 mg of mucinex once in the morning and once at night. However, the pill is feeling too big to swallow now. I'm wondering if he takes it with a big spoonful of dairy free pudding? It's too late for a feeding tube for him, so everything is still taken by mouth.

Thank you for your advice!
 
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You can order a humidifier for the Trilogy (I'm aghast that a clinic would order one without it). Its humidification probably won't be as good as with a regular BiPAP, but it's better than not. You can also connect an HME.

Room humidification when sleeping in a dry climate would definitely be advised. Occasionally, I used one for Larry even here in Seattle.

For anyone still in the getting-a-BiPAP phase, for reasons of better humidification, better safety, and a smoother algorithm, I would really try for the Astral for portable NIV, or a ResMed BiPAP at home.

Inhalers and nebs are not right for everyone, but they would need a script, yes.
 
My trilogy has a separate humidifier that I can adjust. When I'm in Florida I can leave it on the lowest setting, when we come up to Ohio I adjust to the dryness up here.
 
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