I had not been back at the U for long, so had not acquired my ICU shoes all that well yet when a pt entered my life in a way that few patients ever will.
She was on "the list" and had been several times. Each time, you get to "stay on" for a certain amount of time, and then, get taken off, moved out of the ICU (usually at least), have another full work up, and get re-listed. This happens several times for some patients, and it, I am sure, is most frustrating. Our unit remains one of the few that have not been renovated to the degree that being in the 2010+ years seems that it should be- and whomever designed the rooms clearly had never taken care of a patient that was on precautions.
Mrs. A had done the List Dance several times by the time I had really gotten to know her and her family. She had a devoted husband who kept her laughing, and family that cared. She was lucky that way. What she was not so lucky in, however, is exactly how sick she was. Obviously, being on the list meant something was seriously wrong, but also she kept getting those little annoying nosocomial infections. Okay, that is a huge understatement; she never came down with one of the Big Ones (MRSA, VRSA, C-Diff) but the ones that take one off the list but aren't that terrible to actually have.
Her husband had left for the evening, and she called me into her room. I asked her what she wanted and she said "I don't want to be re-listed". It was more than that, really but the end result was she was done. She had had it, and just was tired. At this point, she thought she had been in the hospital for about 6 months. I called in our Fellow (after explaining that I was not the person who needed to know this, but someone that might be able to actually DO something about this needed to hear this from her.) We all cried but clearly, we all understood. One can only take so much. Her reason for staying the path thus far had been for her husband- as I remember it, she said she was really ready months earlier, but she knew he would not want her to make that decision. I was not there the day of the family meeting, but clearly, when one loves as deeply as they loved each other, the decision was made.
Problem was- she had to stay with us. Her meds were not ones that could be stopped quickly and she could not be D/C'd to hospice on the meds. So, weaning began. She did well, and things went as smoothly as can be.
Mrs. A comes back to me a lot during my thoughts of special patients. But this weekend I had a very special Mrs. A moment. Ann Arbor has a lovely thing called Top Of The Park where local musicians play. There is some serious talent in the area. A man named Levi Johnson and his band played this past weekend. As I am wont to do, I began to dance- his was a funky, motown sound that makes even the most tired of feet move. He began (as a black man) to sing "Play That Funky Music White Boy" which brought me back to the last time I saw Mrs. A.
I asked Mrs. A what she wanted most of all and her answer was some good music. Her husband was there- and I asked what that was exactly. I was thinking my Jack Johnson and Michael Fronti might not be it. I was right- They wanted some good soul or funk- 70's type music like- oh- "Play That Funky Music White Boy" So, thank you to iTunes, I downloaded a few songs, we closed the curtains and turned the iPhone up as loud as we could and danced. Well, she moved in her bed and her husband and I danced. I remember that moment, and knew then that this was to be one of those moments I'd never forget- a white woman, in scrubs, in a tiny ICU room, dancing with a black man, and his wife moving as best she could, to the sounds of Motown. I realized then and know now, how absolutely lucky I am to have known them, their love, their courage.
Mrs. A died a week or so later. Her husband was there as were a few of our nurses that went to stay with her at the end. Someone posted a picture of her before she got ill- and she was startling in her beauty. The thing was, I saw that beauty from the inside of her, and it remains one of the most beautiful things I have ever known. My memory of her lives to this day.