11-12-2022 Something is wrong, but we're not quite sure what

(Tricia)

On Thursday, we had Linda sitting up in a chair in our front room, when she said, as she often does, "Please take me home. Let's get in the car and go home." Sometimes, I will ask her to clarify (because, sadly, "home" can have multiple connotations in this situation), but she always says she wants to go back to Mountain View. And it breaks my heart, because even if we did arrange for an ambulance to take her back to her home in Mountain View, I'm not sure how I would set up the same network of care that she has here. Plus, I think when she says, "Take me home," she really means, "Take me back to the independent life I had before." Which, of course, is not possible. It all makes me impossibly sad.

Then, yesterday, Linda gave us all a scare, and none of us knows exactly why. I think I mentioned in the last post that her oxygen rates now plummet if she is off supplemental oxygen for even a short period of time, and she seems to be having more trouble breathing. Yesterday, Linda suddenly could not wake up, no matter how much we called to, touched, or shook her. The day before yesterday, she had been awake and ate her full dinner. According to the overnight caregiver, she was awake and talking as of 5 am Friday morning. But then, for the rest of the day, we could not rouse her at all. A couple of times she opened her eyes, and once she even took a few sips of Diet Coke that we gave her. But otherwise, she seemed the same as she did when she was in a coma at St. Luke's last year.

I cancelled her PT session scheduled for yesterday afternoon, and when the therapist asked why, I explained what was going on, which set off a flurry of phone calls (PT to nurse to doctor to nurse to PT to me). After the phone chain was complete, the PT called back to tell me I should send Linda to the emergency room. But as you know, we've been there before, and it's a long, grueling, unpleasant experience. On top of it all, this time, I really don't see any benefit to having her spend hours in the ER and getting her admitted to the hospital, where she would spend the next two days or more being touched and tested at all hours of day and night. It makes her miserable. And if this is anything serious, we're not going to accept any drastic treatments anyway.

I later spoke to the doctor directly. He said that if we chose not to send Linda to the hospital, he understood. He said that, if we wanted to continue with care, he would recommend the ER because Linda would get a chest x-ray, blood workup, urine analysis, and head CT, and he could figure out exactly what was going on.  But he also said that he saw the argument for keeping her at home.  If we waited a day or so and she remained unresponsive, then it would be time to make the decision: Go to the hospital or go back to hospice.

It was all especially distressing because her unresponsiveness seemed to come from nowhere. Her oxygen levels while on supplemental oxygen were normal, as were her blood pressure and temperature. Even her breathing seemed better.  The only thing that seemed different was that the caregiver gave Linda some Mucinex and a drop of a drug called atropine (which is a late-stage hospice drug that we still had on hand--it's used to help patients breathe more easily). Linda can be so sensitive to certain drugs, so there is a possibility that this drug had unexpected side effects for Linda. But given that the caregiver said Linda was awake early yesterday morning, I'm not so sure the atropine would be the cause. So, we're all at a loss.

But by 4:30 pm yesterday, Linda finally started to wake up.  An hour later she agreed to eat dinner--a smoothie and a grilled cheese sandwich--and then she was watching television. Which left us all asking, "What the heck just happened?" I mean, it's possible that she just wanted to take the day off--in every possible way--but it also seems unlikely that she could be so unresponsive as we shook and called to her unless something was very wrong. 

This morning, she is awake, but still very weak--she can't lift her cup or feed herself. We will watch and wait over the next 24 hours. If it was her just having an atypical reaction to the atropine, then perhaps it will continue to wear off and she'll be stronger by tomorrow morning. But with Linda, there's no way to know.

Regardless, as I've set a "no more morphine" rule in the past after she had a bad reaction, I'm now also going to set a "no more atropine" rule, unless the situation is particularly dire.