But you can move, right?
Thanks, all. Really do appreciate all the useful input.
We're both emotionally ready for the end at any time. CO2 buildup or morphine is the way she wants to go.
Last Sunday morning she was sitting quietly, started to cry and said, "it's time to call hospice." That evening at 6 PM I called EMTs to get some O2. The driver got lost making every wrong turn and circling back on himself several times. Everyone at the ER knew us on sight by name from the previous week's visit. At 10 PM we opted to stay overnight to give us both a rest. We asked for an air mattress. And I went home to the kids.
Monday when I awoke and went in at 10 AM, I found she hadn't had breakfast or teeth brushing. A cart with mattresses showed up at noon.
At noon I asked which hospitalist groups did these doctors supposedly come from? At 2 I called the groups. Neither had received any consult, nor had any record of my PALS. I asked them to send their rounding doctor to our room.
By 3 both hospitalist and pulmonologist had showed up saying they hadn't received any consult. Each quickly looked her over, ordered a test, and left. At 4, when I asked radiology and respiratory, they hadn't gotten any consult, but they sent techs. So we settled in for another overnight.
Tuesday I arrived at 9 am and found she hadn't been tended to at all, and her mattress was UNPLUGGED, totally DEFLATED. She hadn't slept due to the constant excruciating pain in her butt bone. No doctor had seen her. I asked for breakfast and bathroom and reminded everyone to call X-ray. She was scheduled for 10:30. When I called at 11 they said she was scheduled for 11:15. At 11:45 they sent someone to wheel her down to Imaging where her gurney stayed in the hallway unattended for 30 minutes. They shot films and wheeled her back up to bed by 1 PM. At 2 PM I found that no one had ordered lunch for her. By 3 she was being fed the noon meal. I was watching the clock, talking about leaving AMA.
I asked for a Patient Advocate (which brought blank stares) or a complaints department (don't have one) and then toured around the hospital several times with a map in my hand until I found the case management director's office. She was at a meeting, but another woman noted my concerns at 3:30.
By 4 both docs showed up. The hospitalist said she would have come earlier if she knew we were ready for discharge, and said she would enter a note approving discharge if the pulmonologist allowed it. The pulmonologist showed up saying he hadn't heard a thing, didn't know about the patient, hadn't seen any films, and he listened to her chest and said she could go home. I brought our power chair up to the room and we drove away.
Everyone was always nice, friendly, concerned and professional and I was always polite and never raised a voice. But I learned three things from our hospital:
1) Hospitals have a lot of patients to tend to, and unexpected things happen, so a simple task might take all day to accomplish. Hospitals are paid by the day.
2) It's more efficient to process patients as batches. If a task is on their list, a department will endeavor to get it done by the end of their shift.
3) Consulting doctors get their list of names at the beginning of the day, prioritize the list, do the list, and go away. If your consult is not in their service by 7 AM, they won't check for changes until the next day.
4) Patient-centric care or "the patient comes first" was a phrase invented in a marketing meeting. The reality depends upon the individual provider or assistant.
Our whole experience with the medical establishment, everywhere, is summed up here: I can't tell you how many times, when I would say, "Due to ALS, she is totally paralyzed, and cannot move her hands, arms, legs, feet and torso, and has little capacity to swallow or even breathe," the response (from non-doctors) was almost always, "BUT YOU CAN MOVE, RIGHT?"
I'm so sorry. I can't say for sure either way but can say that's how my mom went. It came on sudden and she just started sleeping most of the day for about 2 days. From what I've read here it does sound like a build of CO2. Is she ready to go? Is there any chance she may change her mind about a PEG or Trach now that the event may be approaching?
