Rachael Trigg
  • Female
  • Spokane, WA
  • United States
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About Me:
26 year old female working in the legal services field as a corporate paralegal; dabbles in jewelry sales on the weekends.
About my Loss:
My 67 year old mother went into the hospital October 19, 2012, experiencing acute malaise, weakness, shaking, nausea, paranoia, fever, poor appetite, vertigo, and confusion, amongst other problems. After a week and a half on the "Risk to Fall" floor, being treated for "Conversion Disorder" (a diagnosis from the 1950’s – when the docs couldn’t figure out what was wrong with a patient) she dramatically worsened.
The doctors and most nurses were convinced that she was suffering from a psychotic break brought on by stress. I pleaded with everyone who walked into her room to investigate further, to no avail. I was convinced, knowing my mother very well, that this was not the accurate diagnosis. When I pressed her attending, Dr. Jeff Johnson, about a differential diagnosis, he told me that he was 100% sure that his diagnosis was correct and that he did not have a differential diagnosis. Dr. Johnson informed me that he had been working with a neurologist and a psychiatrist associated with the hospital to work on a diagnosis. He told me that all of her labs and come back inconclusive and that the only thing it could be was a psychiatric break. They had come up with this diagnosis without informing me – even though I had been living at the hospital for the past 4 days. He told me that I was "enabling" her behavior by visiting so frequently and that I should go home and let them do their jobs. I had been staying with her at night because her sundown syndrome was quite intense - she became very adamant about getting out of bed and trying to go home even though she couldn't stand on her own. I had to physically restrain her from getting out of bet dozens of times per night and was barely successful even though I was laying 2 feet away from her. When I voiced my concerns about her getting out of bed they told me not to worry, that they had a bed alarm on which would go off as soon as she got mostly up. They also tried to tell me that she was in the room closest to the nurse’s station so that they could reach her very quickly. I said, "Well she is quick and quite strong" and the nurse told me "Well we are quicker and stronger." - So I went home.
Less than 12 hours after I left the hospital my mother had fallen and hit her head on the floor, leaving a huge bruise on her forehead and two black eyes. Apparently, during the night, the nurses turned off her bed alarm because she was setting it off so frequently trying to get out of bed.... (HOW DOES THIS LOGIC MAKE ANY SENSE AT ALL?) Of course, after this had happened she was assigned a full time sitter and was placed in restraints so she couldn't exit the bed, something that they had told me previously that they were unable to do based on Washington State Law.
At this point I was livid and very suspicious of the staff. I started checking her chart to make sure she had received her meds, and guess what? Many doses had been missed. Apparently the nurses were unaware that there were two pages of additional medications behind the first page. I watched her decline into a semi-comatose state a few days after her fall. She was still twitching all about, making non-purposeful movements and ripping at her clothes and bed sheets. I watched as her respiration became more difficult, it sounded as though she was drowning on herself. Her heart rate escalated and remained at 140 beats per minute for two hours. I kept asking the staff if she was ok, and they assured me that she was. I eventually couldn't stand it any longer and I went to the nursing station and asked if they could call RT to suction her airway. The nurse said that she would get on it right away; I watched her walk away into another patient's room, belonging to a non-critical patient. So I waited for 10, 15, 20 minutes, pacing in and out of her room. Loosing my composure watching my mother suffer so, I went out and I grabbed the first nurse I found and begged her to call RT for my mother. She said she would in a minute - I told her I would wait while she called, and insisted that she call right in front of me. RT was there in 4 minutes and they got right to work. Her struggling was greatly lessened almost immediately.
Soon after that exchange she was transferred to ICU, sedated, intubated, and hooked up to a myriad of drugs, fluids, sustenance, antibiotics, anti-fungals – you name it, she was on it. Her new attending ran the ICU clinic and is the premier AIDS specialist in Spokane running the Deaconess ICU Dr. Dan Coulston, and he was not messing around. My initial meeting with him was very enlightening. He walked into the meeting room, looking like a slightly disheveled cowboy, telling me he was coming off the end of a 36 hour shift. He was a straight shooter, reminding me very much of TV’s Dr. Gregory House. He said he had no clue what was wrong with my mother, but that he had a team of 8 working on her case and that he would not stop until he figured it out. I told him that Dr. Johnston was convinced that she was suffering from conversion disorder; he all but interrupted me and stated “ Yeah, well it’s not.”
FINALLY someone who knew how to do his job! I felt great relief with this new team caring for my mother. She was much more calm, twitching some still but not nearly as much as she had been upstairs. And the tests began, I’m guessing that 15- 20 tests were run per day, blood, CSF, CAT Scans, X Rays, EEGs, MRIs, probably 3 times over by the time we were done.
As the days dragged by, it became apparent that she would not recover from her illness, or at least not to full function. We ran though all the courses of antibiotics, antifungals and other medicines. Diseases such as “Mad Cow” and “Rabies” and “West Nile” were being considered. Coulston ran a round of steroids to bring her back to us – to no avail. At the conclusion of the steroids, with no improvement, we decided to end her suffering on November 7th, 2012. Of course, just as my mother lived her life, it took four times the normal amount of Morphine plus a contra indicator, Versed, for “anxiety” to end her life. That was my mother. She was a tough old bird until the day she died.
Her hospital stay and her death was just the start of the nightmare that was to come. Coulston still had not pinned down what was the cause of my mother’s illness. Mad Cow was still being considered, and, because of this possible diagnosis, the pathology lab at Deaconess would not touch her. Coulston got in touch with the National Prion Surveillance Center and made arrangements for her body to be flown from Spokane to Seattle so they could do a brain biopsy to determine whether or not my mother had fallen victim to Mad Cow. We had to wait a month for those results to come back, all the while my mother’s body was being held hostage in Seattle. When the results came back negative for Mad Cow, they flew her body back to Spokane where the rest of her autopsy continued. After two weeks of waiting, I got a call from Coulston. He sounded relieved and resigned when he told me that the cause of her death was Lung Cancer, a cancer which had presented in one of the most rare ways a cancer can present itself. The full name is Paraneoplastic Lymbic Encephalitis, which occurs in less than 1% of cancer patients.
Finding out the diagnosis was a relief and disaster all at the same time. It’s been two months, and I still can’t believe that she is gone. She was the most kind, gracious, generous, hilarious, wise, beautiful, and downright amazing person I’ve ever met. I have had a wonderful support structure – though I feel like no one really “gets it” unless they have experienced a loss of someone they were really close to. Her passing rocked my world, I am lethargic, severely depressed, unmotivated, uninterested in everything. And I can hear her right now, saying “Stinking Thinking Marcy, that will bring you down so fast. You have to control your thoughts, and not allow yourself to dwell on those negative thoughts.” – But how does a person just stop thinking about another, especially when the person who passed was such a huge player in the life of the one left behind? I am DROWNING!!!! Help.
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