7-25-22 Tough week, better weekend

 (Tricia)

Things were not looking good last week--after Linda aspirated as she was eating her soup, the nurses seemed to think that aspiration pneumonia was inevitable. They were, once again, preparing me for the worst. But by now, I should know that I can't jump to conclusions too quickly--Linda has a habit of surprising people. We gave her an ongoing course of Mucinex, at one of the private duty nurse's suggestions, and by the weekend, the gurgle in her breathing had quieted considerably.  So much so that we were actually able to get her to her Saturday morning appointment with the new primary care physician--so, that, at least, was some good news!

Making that appointment wasn't without challenge, however--when we tried to get her up for her 11:30 appointment, she absolutely did not want to be woken up. She was yelling out a continuous "No, no, no, no!" as we used the lift to get her into the Broda chair. She begged not to be moved. It was hard to ignore that, but we really had no choice. I had spoken to the doctor's assistant earlier in the week to let her know what was going on, and she emphasized that even if Linda was still feeling weak, the doctor really wanted us to try to get her there, so he could establish the relationship. So we got her ready to go, in spite of herself.

And as has been the case with Linda, once we got her into the chair and into the medical transport van, she was perfectly calm. I asked her how she was feeling, and she said, "Fine," so then I asked why she had raised such a ruckus earlier, and she just shrugged and said, "I don't know." At moments like these, we've started to say that "Linda's just in one of her 'NO' moods." Whatever it is we want her to do, eat, watch, or say, she's going to say, "No!" And then we do it anyway, she's perfectly fine with it. We're starting to get a little more adept at differentiating between a "no" said out of obstinacy and a "no" said for good reason, but it's still an imperfect science, for sure.

Once we got into see the doctor (whose name, in an odd turn of events, is "Kevorkian"!), Linda was calm and as clear as I've seen her in several days. She answered his questions fairly accurately, showing that she can focus when she absolutely wants to.  He was so thorough--he listened to me intently as I told her whole history. There was a young woman, a medical resident, in the room observing, and he interjected at a few points of my narrative to say to the resident things like, "See? Ageism! It's rampant in the medical field," and "They just looked at her age and wrote her off." As a specialist in geriatrics, he validated what we have been experiencing over the last year. Although I wish we hadn't come to him so late, it still was a comfort to finally have someone see Linda as a human being, not just an elderly patient.

He carefully went through all of her medications and tweaked the regimen a little.  But his biggest concern was the C.diff.  If we didn't get that under control, he stressed, "she was done." So, at his recommendation, Linda will go on an indefinite course of vancomycin. That particular drug really keeps her in a thicker mental fog than normal, so the idea that she must stay on it is a bit sad...but it's better than having the infection return. Then, once again, we have to see if she bounces back from this latest round C.diff, enough to come off hospice.  If she does, the doctor said, then we can start discussing the possibility of a fecal transplant, which is the only treatment known to cure recurrent, resistant C.diff.

Once we got home, Linda had a good weekend. She asked to get up (although she wants to get up on her own feet, which isn't yet a possibility), so we got her up in the chair to eat and watch television with us three times. Although she's weaker than she was before this latest infection, she does seem to be feeling better.

This morning, I had to decide whether to cancel Linda's next appointment. She was scheduled to a see a neurologist who specializes in cognitive issues on Thursday morning at 8:30 a.m.--this appointment was set up way back in March, before hospice. Given everything that has been going on, though, I decided to call the neurologist's office to cancel, at least for now. Then, about five minutes after I put the phone down from canceling that appointment, it rang. In an odd turn of events, it was the scheduler from the office of the infectious disease doctor who specializes in treating C.diff infections. Last month, I had set up an appointment for Linda with him, but he didn't have an opening until September 22. But minutes after I canceled the appointment with the neurologist, the infectious disease doctor's office called to say they had an appointment open up for....this Thursday morning at 9:20.  

How strange is that? So, Linda has another outing coming up. I also called Dr. Kevorkian to get his thoughts, and he said, "I can manage her mental function, so it's a good call to cancel the appointment with neurologist. But definitely get her to the infectious disease doctor. We need to fix the C.diff!"

So that's where we stand now. The vancomycin is controlling the C.diff, her aspiration has subsided (although she still has a slight cough), she finally has a primary care physician who seems to care, and her long-awaited appointment with the infectious disease doctor has gone from being two months to just three days away.

This last week has been a whirlwind! If I try to look too far ahead, I can feel overwhelmed by it all. But as Ed has told me through this whole situation, we just have to stay focused on the next thing. We have to let the future take care of itself.