I tested the vest two month after my last bout of pneumonia. I have a strong cough even after all these years. I've had numerous chest tubes and have gone through everything Linda Lisa mentioned with Gary. The vest didn't make my cough more productive so we sent it back.

Linda Lisa, if Gary's high pressure alarm went off 50-100 time a day his high pressure alarm sensitivity needs turned up some. Mine's on 65, I have a LP10. No we didn't get permission from the doctor to change that setting either. Who needs anyone's stinkin permission?!? LoL

Hi Dave..
The sensitivity setting has always been at 65..
Chest tubes stink... and I feel for you...we had a problem where after it was put in his blood pressure dropped and they could not awaken him...his vent tidal volumes dropped in half..because the tube went into far..I was watching the volumes drop an 1/2 hour after the insertion ..and requested a nurse to immediately page a doc to come back up...
His blood pressure kept dropping .as soon as the doc entered the room monitors and alarms started going off..blood pressure raidly fell and pulse was erradict...finally Dopamine was ordered to pull the blood pressure back up and the chest tube was pulled back out a little further.....but it was a scary night..6 people jumping on him to get him stable...and finding the right amount of dopamine to keep him stable was a rocky night..
Gary 's cares are tightly supervised by the VA on the vent . I 'm inspected once a month. at irregular intervals as part of the VA 's standard protocol for in home care here...infact Gary is only one of two people in our area that was allowed to be placed at home by the VA. on a vent ....so I do have to ask permission to change vent settings to be allowed to keep him home in my care ..the only other option would be to refuse the care entirely and go strictly Medicare ..however he does have a good doc..and they go well beyond what Medicare would provide in regards to providing a rotaing air mattress and back up generator.. plus I would not feel comfortable changing the seeting myself anyway...but due to his history of over breathing the vent and pnuemothorax the pulmonologist himself turned the "peep" from 10 down to 3 to try to avoid another occurrence..so far so good......
The coughing 50 -100 a day "only" occured for the 6 weeks he was unable to use the cough assist.. ..before the cough assist stopped and after the cough assist was able to be used again ...he only typically coughs 4-6 times a day...Lisa

Hey Lisa,
Through the years of "knowing" you and Gary through BT1 and know BT2, it has always been apparent how much fight the both of you have. I am proud to "know' you.
Chris's peep has always been set at 5.....right from the day he was vented....I don't think Chris can be 1 minute off his vent. It boggles my mind that he is in the state he is in in such a relatively short period of time.

Dave, I wish my brother would want to get on the internet and see your drive. Don't get me wrong, he hasn't given up....he would have given up a long time ago if that was the case. He just doesn't seem to have any interest but to lay in bed and watch TV.....the last time he got out of bed was Memorial Day to watch the parade for 45 minutes...then back in bed. What is your secret??? You are truely an inspiration.

Love to you all,
Alison

Alison,
I still enjoy participating in all life has to offer and I look at all the obstacle ALS provides as an adventure. It would be easier to just lay in bed all the time but that isn't me. I'm a people person and I like interaction with others.

If I never got out of bed or participate in life I wouldn't expect my family to provide care for me at home. It's not like I really expect them to even now but they want to because I'm game to get out and go wherever they want to go. If I never got out of bed I'd rather be stowed away in a nursing home somewhere.

I don't always side with the PALS every time I hear of the CALS leaving after a period of time because of that very reason.