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  1. mysisterskeeper

    update of my sister

    Its amazing how ALS creeps around like its going to take away my sister and changes its mind. I sure thought she was leaving here back in august and september. She is actually doing way better and breathing isn't the big issue anymore. Mucus seems to be the battle now. We have had a couple...
  2. mysisterskeeper

    i never did like roller coasters

    This has been a whirlwind of sorts. No time for sleep means taunting my epilepsy. Lets not mention my own health. I gotta figure out how to take care of us both. I try to remember my medicine everyday, but I never forget hers. So many false starts (what I call it when I think she is dying...
  3. mysisterskeeper

    cell oxygenation - is vent still sustainable

    The hospice nurse said that if my sister decided to vent at this point she would probably still die because of cell oxygenation and how little oxygen she is moving through her body. She said her o2 stats may look good on a pulsoc but that is only measuring the blood content not how much oxygen...
  4. mysisterskeeper

    vent and stil dying

    The hospice nurse said that if my sister decided to vent at this point she would probably still die because of cell oxygenation and how little oxygen she is moving through her body. She said her o2 stats may look good on a pulsoc but that is only measuring the blood content not how much oxygen...
  5. mysisterskeeper

    the mood swinggggs

    Its been a rough day for mood swings - she has felt so much better finally and all I have gotten is grief like I can't do anything right.
  6. mysisterskeeper

    preactive dying

    I hope this is not the phase we are in. I am scared yet encouraged. I am nervous yet dedicated to my sisters walk. The past 4 days have been rough but sometimes she still comes out of the dioxide drunkeness. We are here again. The day started so much better after another fu#ked up night and...
  7. mysisterskeeper

    My sis and I had the biggest arguement ever

    We really got into it. Last week the hospice doctor came for his visit and we talked about how much she has been biting her tongue and the knot that has formed. He told us to use a swab of chloroseptic for the pain. He also told us to be careful not to get it on her throat or spray her throat...
  8. mysisterskeeper

    FVC forced vital capacity score

    how does this impact death? Her score is an 11 now. The carbon dioxide levels in the 50-60's.
  9. mysisterskeeper

    My sister has had ALS for 12 years

    I have been her caregiver only since this past November. She lives with me. I also have a 19 year old daughter who lives at home. I get frustrated because family always says how they will help but always has excuses. I hate that she is now in the final stages and we aren't on the same team...
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