Bipap and cough machine

[Dixie111]

Hi all. Doing well, just one more question. Dad is using his trilogy vent mask with oxygen attached and alternating with his cough machine. He does this all day long. We give him anxiety medicine and he sleeps a little then goes right back to it. It is very tiring for Dad and me. I tried giving him morphine per Hospice every 2 hours but he says it upsets his stomach and he gets hot flashes. Any advice?
Still only taking a few bites of applesauce and or pudding and a few sips of drink here and there. Cannot walk and hardly speaks. Bedridden now and losing weight rapidly

 

[Narrowminded]

Hi Dixie - sorry I don't have any advise, but I want to let you know I'm thinking about you, praying and sending hugs.

Sue

 

[Dixie111]

Thank you for thinking of me

 

[ehd42]

Hi Dixie,

It is really hard to give advice when you have little information. I assume that your dad is using a cough assist machine frequently because his airways are filled with mucus and this is making him cough constantly. What is his oxygen saturation level off 02? What effect does oxygen administration have on his oxygen level? Is he wheezing? Does he have a history of COPD or congestive heart failure, either of which could coexist in hypoventilation ALS? Does the morphine significantly diminish his shortness of breath? Is he aspirating?
Ask your dad's Dr. to address these questions so that a coexisting problem could be addressed. If your dad's Dr. hears wheezing on exam then a bronchodilator with the without steroids might help. Have your dad's trilogy settings been reviewed and optimized. If your dad is aspirating then a tracheostomy and a feeding tube need to be considered. I suspect that your physician has already reviewed all of this and perhaps your dad may have declined these options.
It sounds like your dad is suffering greatly and every effort should made to be sure that no stone has been left unturned regarding his symptoms of shortness of breath that inability to eat. Review your dad's level of antianxiety medication to be sure that that it is also has been optimized. Finally, what are your dad's wishes regarding invasive medical treatment at this point? You are a wonderful daughter and your dad is lucky to have you in his corner.

Best wishes

Eliot

 

[lgelb]

Eliot, Dixie's dad declined a PEG so presume trach is off the table as well.

Dixie, does he do better with the oxygen than without? It is certainly important to optimize his Trilogy settings -- do you know how to read the data on the screen when it's on?-- but if he has a lot of mucus, also reconsidering the humidification (too much is as bad as too little), room temp, dust/irritants and other environmental factors may be worthwhile also.

Best,
Laurie

 

[affected]

I would ask hospice to come back and see him immediately if the morphine is not agreeing with him so that they can put something else in place.

Their job is comfort care, and they have a swag of strategies, and seeing him for themselves they can come up with a new strategy for him. hugs xx