Status
Not open for further replies.

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
I wonder, though: he literaly spends hours, every night, trying to cough out what bothers him in his throat...

He must still be able to succeed, becaues eventually he goes to sleep and sleeps through the night 95% of the time.

What will happen when he can't cough anything anymore? And still refuses trach?
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
729
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
Dealing with naive optimism is exhausting. What are they hoping for? That a passing truck takes him before ALS does? It sure could happen and all your worries and plans would be for naught. But I prefer you getting informed.

I don't have an answer to your last question, what would happen without a trach. But I will add another question:

Are all the possibilities to get rid of the phlegm more easily already exhausted? Maybe something to thin the mucous?

A lot of liquid to begin with, like alot. Being dehydrated makes a cough worse, I reckon. And with the tube it's easy to drink more than enough.
Then there's medication to make it more liquid. Expectorants? I'm out of my depth here but I remember reading about it here and am sure that others know way more about this. Any input? Am I on the wrong track here?
 

KateEmerson

Senior member
Joined
Apr 23, 2016
Messages
513
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
City
Boston
The " cough assist" is for that purpose, to help them cough. The breathing and coughing muscles continue to weaken over time in ALS and they need help clearing secretions from the lungs and as swallow muscles weaken they need help clearing saliva. The cough assist and/ suctioning are for this purpose and are critical in preventing pneumonia. I think focusing on getting your Dad comfortable with these would be the best goal while you're there. The cough assist has many settings and needs to be adjusted to his comfort. The company that supplies you with a cough assist should have a Respiritory Therapist( RT ) who can come to your house to work with your Dad to find a setting that works for him. He would still need to use the suction and/or cough assist even with the trach if he chose that option . Your Dad is so fortunate to have you. Kate
 

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
Thank you for your answers, Wishmobbing and Kate.

Yes, I'll talk to the doctor so that perhaps he could find someone who knows how to use cough assist and help us with that.

And then, yes, my big hope is that things will improve in general when he starts using the peg. He will finally be able to hydrate properly, he'll be stronger with more calories; parhaps when he sees his quality of life improve - he'll give more thoughts to the trach as a next step...
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
729
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
Improvements in quality of life are a great motivator.
I'm sorry, I'm not sure if I read it right: Does he refuse to get a feeding tube placed or did he get one and just doesn't use it?
Being hydrated makes a world of difference.
Good plan to play around with the settings of the cough assist or better yet have a pro do it.
 

NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
He used to refuse a peg, and that was it... He finally agreed a few days ago, and will have it placed this Thursday!! This is a great success I just pray that no complications happen... And I hope that ones he eats and drinks through the peg, his quality of life will truly improve and give him some hope...
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
729
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
Oh, that is such good news! Tell him success from me! My boyfriend was really worried about the procedure (I wasn't because I've read mostly reassuring stuff about it) and then was surprised at how quickly it all was done. He seemed much stronger after he got fully hydrated and recovered from being in the hospital, more drive and better digestion.
So fingers crossed on no complications, nice nurses and quick healing!
 

debwilson77

Active member
Joined
Jan 10, 2016
Messages
74
Reason
CALS
Diagnosis
02/2016
Country
US
State
AZ
City
chandler
If he can suction himself or attach the cough assist and reconnect tubing if it should come loose then yes. The problem comes if he gets a mucus plug, he would need to be able remain calm until he can clear it. I leave my husband for 15-20 minutes once in a while otherwise I have someone come over. Also I also suction him before I head out. I have shown them what to do, some would do better than others but all can call 911. Unfortunately this is a relentless disease.
 
Status
Not open for further replies.
Top