Recent content by SolarDust

  1. S

    8 liters per minute of oxygen for ALS hospice care

    Tillie, Thanks for your kind thoughtful words. I am going to wind down on this thread and agree that it is probably not going to lead to any more insights. I thought it worth a shot to hear from other caregivers or current PALS who would be able to provide me their first-hand experiences with...
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    8 liters per minute of oxygen for ALS hospice care

    She was receiving hospice care in her home. She died the day after my father signed the papers for hospice care. Sadly, he did not even get one bit of actual help from this "hospice" before my mother passed away.
  3. S

    8 liters per minute of oxygen for ALS hospice care

    Just notice that this sentence wasn't completed properly. I mean to say "and couldn't put two and two together that her progressive muscular atrophy plus inexplicable decline in lung function = very high probability of ALS" If it wasn't for me getting her seen at John Hopkins she would have...
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    8 liters per minute of oxygen for ALS hospice care

    Laurie, You do not know all the circumstances, but I do respect that you are a long time member of this forum so I will respond to your comment as reasonably as I can. I do not care for your term "chasing." I am seeking the truth and finding out why my mother did not receive the proper care...
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    8 liters per minute of oxygen for ALS hospice care

    Thanks everyone for their thoughts. I don't think ever mentioned that I was thinking about pursuing legal action. I could see how someone could think that was where I was headed. I am still investigating the circumstances, and I am just taking it one step at time. Basically, I'm not trying to...
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    8 liters per minute of oxygen for ALS hospice care

    I do know she did not want a tracheostomy, but I also know that she had a very strong will to live. She knew and was aware that everyone was visiting her very soon. Yes, her breathing had declined quite significantly in the last month, but it wasn't at crisis point where she was having traumatic...
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    8 liters per minute of oxygen for ALS hospice care

    Her FVC was below 20%, and had gotten worse in the last month or so. The report I read from the doctor from her most recent ALS clinic visit said nothing about her death being imminent. I was not the main caregiver, but I was kept updated several days a week regarding her condition and tried to...
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    8 liters per minute of oxygen for ALS hospice care

    Anybody here ever heard of an ALS patient receiving 8 liters of oxygen in combination with Bipap but no ABG testing to properly titrate? I am doing some investigation since I believe this hospice had no idea what they were doing and my mother died prematurely due to C02 buildup leading to...
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