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  • I was so sad to get your message about Ron. You and your family are in my prayers. If I can be of support in anyway please message me anytime. Sending you a big hug. Kim
    Hi! I How are things going for you? My dad has moved away from our small town to move to Dallas, Texas where my brother and sister live. I miss him so much. We just couldn't find adequate care for him here. Dad isn't good but his progression has been staying pretty much the same for awhile. Our twins will be turning 16 on the 19th. Two new driver's in the family. Yikes! Take care, Kim
    I could write a book about our nighttime experiences but one thing I was wondering...did you husband get hot at night.Ron has me turning the heat off and opening windows,also he is very sensitive to smells and says it's hard to breath if there is a strong smell.I look at his chest and there is really nothing left but I don't know what that means...he refuses to go to the dr.I called hospice to get morphine and Ativan but I'm still waiting and I don't snow if he will take themm anyway
    Hi Debbie... I do check in from time to time. Ask away... I'll share what I know....

    Does he have COPD or other lung issues besides ALS? O2 sats aren't enough to assure proper O2 levels--he needs to have blood gasses drawn, probably.
    Hi Debbie, your husband sounds like mine. Mine wants no feeding tube, no vent. Im scared for this. We arent in the situation of needing those things yet, but I know its down the road, because there is nothing good down the road....How is your husband. Can you tell me how it is when they dont want the vent or feeding tube, what do i need to know?
    Hi Debbie,
    Just wanted to let you know you and Ron are in my prayers. Hope the boys can help you out a little so you can get a little rest. Sending you a hug, Kim
    Hi KIm
    I havent been on tooo much latley..im am consumed with Rons care..Still refusing to take any thing that might make him more comforable.Nights are bad.I am up every hour stretch out his arm and legs..eating is getting ba..he has so much saliva ,gets tied chewing and has spiration daily...its a long hard road,i find myself frustrTED AS MANY OF THESE THING S COULD BE HELPED WITH MEDS BUT HE WANTS ME TO DO IT ALL..I HAVE TO JUST BREATH.pray and accept his wishes but its hard.My boys are all coming home for christmas and I have been baking and decorating,,its hard to be all jolly in the midst of this but Im trying!Take care
    Hi Debbie,
    How are things going for you? My dad is back staying at his home for the time being. He got sick the night he came home with vomitting and diarhea . Thank Godness he if starting to feel better and is drinking and eating. I was so worried about him getting dehydrated. We are slowly putting our Christmas decorations up around our house. Take care of yourself. You are in my prayers. Kim
    believe me I have had to the hemilich several times..they say they can do it(i have never witnessed it)But it is all together differnt when your pals has that look of panic on their face and it all rests with your ability..I will have no regrets when our journey is done.Im making sure of that..i dont want to say i wish i did this or that..Just doing my best,putting in my heart and soul to everything and his family can go to >>>>!
    You are doing everything you can - everything he is allowing you to do. Don't worry about what his family thinks if they're not supporting his decisions and all that you're doing. I'm not sure how involved they are. Just focus on the two of you. One thing I would ask is do you know how to perform the Heimlich manoeuvre? Just in case he chokes. We had to perform it twice on Bob. He started turning blue right away with no air moving in or out. This is all so difficult. Thinking of you. Yasmin
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