5-6-2022 Linda is at home again, asking for "clumsky"

(Tricia)

It has been a difficult week. The sudden onset of the C.diff really threw everything off course, and poor Linda had to deal with even more disruption and discomfort. The healthcare providers at Missouri Baptist were able to get Linda's C.diff back under control with a course of vancomycin. However, her infectious disease doctor refused to consider any further treatments for the C.diff (such as a fecal microbiota transplant). He actually refused see her again at all, but only sent messages through the hospitalist.

The hospitalist also kindly shared with me that it was the infectious disease doctor's opinion that "the inappropriate use of antibiotics at St. Mary's" had caused the C.diff to recur. I can't remember if I mentioned here, but once St. Mary's started pumping her full of new antibiotics (to prevent things like MRSA and pneumonia--conditions Linda did not have), I immediately called the Mo-Bap infectious disease doctor's office to ask him what I should do, because I was concerned that it was inappropriate, only to be told by his nurse practitioner that "he could not comment on a case being treated at another hospital." It didn't matter that I had had no say in which hospital BJEC sent her to--only that she was there.

In that case, it would have been great if he could have kept his opinion that the antibiotics at St. Mary's did indeed cause the very thing I had been so concerned about--the thing he had refused to help me with--to himself. I was at a loss for words. When I told the hospitalist as much, he immediately said, "Oh, I probably shouldn't have told you he said that." Yeah, you think?

One of the few bright spots at Mo-Bap has been the nurses. Many of them recognized Linda because they had cared for her before, and they have all treated her with great care.

Linda also has a pressure ulcer that the wound care team at Mo-Bap said was untreatable and could not be healed. But after the wound care team saw Linda, the hospitalist sent a surgeon to the room who offered to treat the wound surgically by debriding away the dead tissue. The surgery would have left a large wound and required an appliance called a "wound vac" to hold it closed, but he was quite enthusiastic about it, saying it would improve her comfort level. After I agonized over whether to have that treatment done, it all came to nothing anyway:  The very next day, the surgeon who had been so enthusiastic about the prospect of surgical debridement before, returned to the room to say, "Oh, yeah--we actually don't think that's a good idea anymore."

This kind of "here's a treatment that might help--no wait, we actually aren't going to that" thing has happened so often, it would be funny under other circumstances. I feel as if we're stuck in some kind of medical horror version of the movie "Office Space." It is all just so ridiculous. However, this time, I actually agreed that any surgery on the wound wasn't a good idea. Still, I was not impressed by the surgeon's rapid swing from "This is a great option" to "This is a bad option." It made no sense to have offered it up as an option at all. It made it seem like he didn't know what he was talking about.

Linda finally was discharged back to a different hospice agency yesterday. When Linda first went into hospice, I had chosen Visiting Nurses Association based on its many good reviews. But I was not happy with the level of education and support I received, especially when everything went so wrong last Thursday.  So I spent this past Monday, Tuesday, and Wednesday interviewing different hospices and trying to decide whether to make the move. I actually called the VNA as well and left two messages asking about how they would proceed, especially given Linda's worsening pressure ulcer, thinking that maybe after I talked to them I might feel better about sticking with them. But they did not call me back. I guess from the tone of my message they knew I was unhappy. So, that made the decision to switch pretty easy.

I ended up choosing an agency called Pathways because of some glowing recommendations I read on the Nextdoor website, and because of the level of wound care that they provide. The information and support that Pathways has provided in just two days has made me far more comfortable than I was with the VNA. Having all the equipment switched out from one hospice to the other wasn't fun, but everything is settled once again. This time, we also had regular caregiving in place before Linda got back home, which made the switch less stressful as well.

Linda has been resting, for the most part, since she got home. During the intake with Pathways yesterday, the hospice nurse was a bit confused about Linda's diagnosis that qualified her for hospice--the doctors at Missouri Baptist had not specified in the paperwork. I asked her, only half jokingly, whether "everything" was a diagnosis.  She laughed, saying that "the insurance company needs a definitive diagnosis."  She settled on "congestive heart failure," because she said that would result in the insurance company covering the most drugs and services. It's always about the insurance company--it makes me want to scream.

Once we got Linda home and the Pathways nurse looked at Linda's wound, the nurse actually had a much more hopeful take on it. She said that it was more superficial than she had been led to believe from the doctor's notes, and with proper care we could keep it from getting worse and could possibly make it better. So, with things going so poorly for so long, we'll take anything positive anywhere we can.

Everyone who hears Linda's story is just floored by all that she has been through. I have no idea why it is so difficult to have a healthcare system that cares for patients, especially those with complex conditions, in a more organized and compassionate way. But it's that system that we seem to be stuck with. With my own health, I have always tried to take as much control as I can and create workarounds to make the system work in my favor as much as possible. But as I have tried to help Linda through this whole awful situation, I just felt as if I had no control at all.

For now, we are now all in a "we have to wait and see what happens" frame of mind. There's nothing else we can do. Linda is now comfortable in the other room watching "The Rockford Files," while I am out in our family room where I have set up my new office. Sarah, the caregiver, just came to me to say that Linda was asking for something, but she couldn't understand what it might be. When I went in to ask, I was met with another "Linda-ism":  She said, "I want some clumsky."  She was quite sure about that! I asked her why she wanted clumsky, she said "because it's yummy, yummy, yummy!" Upon further questioning about what type of food clumsky was (sweet) and what color it was (brown), we finally understood that she wanted some chocolate pudding. Unfortunately, we didn't have any on hand, but when I brought her vanilla pudding, which we did have, she then switched things up to say, "No, I wanted the pudding for her [Sarah]." 

Brain injury or no brain injury, Linda has remained a mystery! That said, I obviously need to have Ed bring home some more chocolate pudding. :-)