Recent content by Meldz

  1. M

    Pneumonia- intubation?

    Thank you everyone for your input. It helped with my decision. I stuck with no intubation and I'm glad I did. The hospital will be glad to see me go. I had to tell them exactly how I wanted him cared for and they finally realized that I knew how to treat his condition. We will be saying goodbye...
  2. M

    Pneumonia- intubation?

    At the hospital, they've told me he can only be on the bipap 4 days, which I know is incorrect since many PALS live o it 24/7. I over hear the staff telling each other things, but not me. I feel like I'm being left out of the loop. Its a little frustrating. I had to have an argument with the...
  3. M

    Pneumonia- intubation?

    Let me see if I understand, so if he is intubated for a long time, which is how long? His only option would be a trach?
  4. M

    Pneumonia- intubation?

    They haven't said anything about secretions. The hospital he is in has stayed in touch with his ALS doc, and she would like to see him get off of the bipap. At this hospital, they tell me he can only be on the bipap 4 days. They obviously don't know that ALS patients use it all the time. His...
  5. M

    Pneumonia- intubation?

    We are currently in the ICU with pneumonia. It's been 2 days, and he's been on the bipap almost continuously. He's had a few hours where he was on high pressure vent, but then had distress and back on the bipap. My husband is adamant about not getting a trach, but we had only slightly talked...
  6. M

    How do you all feel ?

    I know exactly how you feel. My husband had his first symptoms in April 2019, was diagnosed in September, although we suspected in June. His disease is also very quickly progressing. I had a good cry about a week ago, feeling exactly the same way. He holds my hand differently, can barely talk...
  7. M

    Wheelchair van

    We are now at the point where I am going to buy a van.. side note. I thought I was done driving vans when the kids left. Sigh. Any tips I shoould know? Specifics to look for. I've looked online and have seen the rear entry vans, but have never actually seen one in person. I'm in the Sacramento...
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