When Dad and I got to aunt I's room today, Kiersi (one of her physical therapists) was working with her; they had already decided that since aunt I was very tired, she would just sit on the edge of the bed today instead of getting into the chair (which is very tiring for her). Dad and I were going to have our "family consultation" at 2:00 today; she wanted to be awake and alert enough to hear our report when we came back. Smart cookie, that one. She told us a bit of a horror story, though, about having soiled herself overnight and sitting in her mess for 6 hours, with no one coming to clean her up. She was also told by a morning nurse that her panic attacks were her own fault, and another morning nurse shut off the room air conditioning (which is very problematic since she really overheats when she's taken off the ventilator).
Just as we were going in to the meeting, her speech and swallow therapist came in, and while she had her speaking tube in, we called her good friend Joan in New York, who was delighted to hear her - really *hear* her. We left aunt at 2:00, with the two of them continuing the therapy.
So the "family consultation" was meeting with the directors of the areas of expertise of the hospital. We get to bring all our questions and meet with the case nurse, the head of all rehab, the head of respiratory rehab, and the head dietitian to get answers. Instead of starting in with her physical status, I told them about her overnight experiences. They all had the good sense to look aghast and started scribbling notes. "That should never happen," "thank you for bringing this to our attention," "we have no problem telling workers that if they don't meet the level of care we expect they are welcome to work elsewhere." I told them that this was probably not an aberration, that long response times for nurse calls are not uncommon; we've experienced waits of 20 and 30 minutes, and even at that, we often have to go to the nurses' station to get attention. They said when that happens, I should ask for the nursing supervisor, not the charge nurse and bring it to his/her attention. I guess it really does come down to a squeaky wheel.
We then talked about aunt I's progress. They all agree, she's doing very well. On Monday, the doctor had ordered her off the vent for a half hour or "as tolerating,"; that was the day she handled 2 hours and 15 minutes. So, with such a good day, he upped the orders to be two 2-hour sessions off the vent per day, which she was doing Tuesday and Wednesday. Since she tolerated that so well, he upped the ante: 12 continuous hours off the vent. She still has the VRE infection, but apparently does not have her yeast infection anymore. I asked them how often the patients are supposed to be bathed and have their gowns changed. They said twice a day, once during the day and once at night. I told them that for the previous 2 or 3 days, I didn't think hers had been changed. More scribbling, more notes.
Her big milestones going forward all have to do with getting off the vent and eventually having the trach removed. They count in 3 day chunks of time. I think the ultimate 3-day chunk is 3 days completely off the vent and able to cough up her secretions successfully. Of course, the insurance company's view of when she can be moved is another story. The scary thing we heard is that if she can't/won't wean, there are no respiratory-dependent facilities in the state of Florida to transfer her to. She'd have to go out of state. Good lord...
We got back and auntie I was resting. We gave her our report and told her that even when she's tired, she has to get in the chair every day, has to get her upper body muscles moving around, and has to do her swallow exercises. Off the vent, out of that place. She knows her marching orders.
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