Jeff had been an electrician for 20 years and had recently become a MN State Electrical Inspector (May 2021). He had also been a basketball coach for 12 years. The 4 weekends prior to hospitalization, we had picked the nicest weekend day and hiked 7-9 miles at a good clip. When he got sick, we didn’t think much of it because our kids and friends had all had COVID-19 with no issues. We didn’t know about oximeters and had thought about acquiring an ivermectin supply, but our timing was off. When I drove him to the hospital on Friday night 10/29/21 at about 9pm, I was strangely calm.

They sent me home after paperwork was completed but then called me back at about 11:30. They said he had crashed and they had to intubate him. He needed to be moved to a bigger facility and the ER doctor had secured a bed at the VA hospital in the twin cities, but he would have to be flown there: flying allowed 2 sets of hands to keep him stable with the 9-10 hookups he now had and would shorten the travel time. They asked if I was okay with the flight, as the cost would be ours, and told me that I could come back to the hospital and stay with Jeff until they took him to the airport.

The Altru flight crew showed up at 1:30am and walked in announcing the need for a 9volt battery. Jeff was stable on the ER’s ventilator with an O2 of low 90’s. The local staff had to step away to allow the flight nurse to connect Jeff to their travel equipment, which the travel nurse apparently did incorrectly. I was whisked out of the emergency room for some feigned paperwork correction and the ER doctor and nurse had to jump in with a hand pump. The information I heard after was that the flight nurse had hooked Jeff up inaccurately and dropped his O2 to 40%. I also think that, not just (1), but (2) 9v batteries might have been needed as the VA indicated that Jeff’s O2 was only mid-80’s upon arrival.

The first ten days were spent trying to get Jeff’s PEEP number into a healthier range and it was slowly moving in the desired direction. He had no secondary infections, it seemed, until I cancelled the “Family Meeting”, which was planned for the 2-week mark. The resident had mentioned the need for an ‘End of Life’ discussion during the ‘Family Meeting’, despite their claim that they would continue aggressive cares for as long as I wanted. The roller-coaster had started.

The roller-coaster continued throughout his ICU stay (2 months total) and even well into his rehab. Due to the length of his stay, which was 6.5 months, this story is very long, and even longer when I tell it….

The transgressions that Jeff and I both experienced occurred mostly during his stay in the ICU but plenty happened outside of it as well. The following are the most egregious:

– Multiple failed, contraindicated, and unnecessary Bumex diuretic challenges in the presence of consistent anuria, causing further harm to his kidneys, leading to PRES or hepatic encephalopathy and the bleed in his occipital region of his brain, coma for 10 days following sedation weaning, and…. resulting in cortical blindness and other vision disabilities. I believe that Bumex was used in the same way that remdesivir was, with an end goal of killing kidney function which then would lead to ultimate death

– Failure to monitor blood clotting ability before or after tracheostomy surgery, despite excessive use of heparin during the 4 previous weeks. This could have also been the cause of the bleed in his occipital region

– Seven or more (7+) verbal assaults of inappropriate badgering and pressure to establish a code change from Full to DNR by nurses, chaplains, and doctors during one 5-day period which I identified as a “coordinated effort to demoralize me”

– Changing Jeff’s code status without my written consent or knowledge, especially at a time when he appeared to be improving

– Never being informed that a change from Full to DNR had taken place, nor being presented with the legal paperwork to sign

– A perceived blatant attempt to murder Jeff at the end of this 5-day assault consisting of the following: some foreign object being pushed into his abdomen, leading to life-threatening bleeding; no nurse on record for this 12 hour day shift on 12/18/21; a Divinely placed night nurse taking actions that thwarted this attempt by replacing orders for pressure-dressings with an ostomy bag, which offered a pressure-free opening as well as a measure of blood loss; a Divinely placed non-ICU doctor willing to write exactly what she observed in the ostomy bag,  Jeff’s responses to her exam, order a CT scan and surgery consult to close the gaping/oozing puncture hole; no follow-up allowed to examine in detail what Jeff’s body had expelled, specifically the “yellow material and some contents that are hard to palpation” noted in the ostomy bag, as the non-ICU doctor is ‘told’ to leave… that the ICU staff will finish up; Jeff survives this murder attempt and THAT is when the attending doctor notes that he plans to notify Risk Management

– Failure to identify, or even explore the cause of, the rash on his back noted on 12/5/21 and associate such with the only new medication given on 12/4/21, specifically Keppra

– Medication mismanagement, with special focus on the systemic assault of Keppra for 5+ months as well as a Keppra overdose in January 2022, unnecessary Amantadine, and a new prescription of Lansoprazole without the needed supplemental folic acid initially, all leading to hypercalcemia and a drug-induced psychotic state, exacerbating damage to his liver and kidneys, and… forcing Jeff back into the ICU (1/20/22-1/31/22) with more time being bed-locked, leading to more atrophy and muscle loss, and the possible cause of the stroke found on 1/20/22.

– The bevy of drugs thrown at him while in ICU during January 2022, with 2 doctors informing me that: ‘when you sign into a hospital, you forfeit your rights to make decisions about drugs and procedures’, and that one doctor had obtained ‘Jeff’s consent’ to drugs she prescribed for him, despite his complete inability to decide anything for himself due to his cognitive compromises which were well noted in his file. But…the DNR was still in place until 1/28/22

– Allowing a group of people who have no physical contact with the patient to manage the daily dose of a drug (warfarin) that could lead to multiple complications such as hemorrhagic strokes, internal bleeding, or fatal skin diseases such as Stevens-Johnson Syndrome. Such management is done by looking at lab numbers only.

– On 3/28/22, Jeff was sent from rehab for a ‘full workup’ because of suspected internal bleeding (due to declining hemoglobin) and, on that same day, he was given the largest dose of warfarin (10mg) since its start on 1/20/22

– Systemic refusal to explore the reason for his debilitating pruritus leading to dangerous levels of sleep deprivation, an absence of any quality healing sleep, the resulting inability to participate fully in restorative therapies prolonging his recovery, and a continual assault on his liver, kidneys, and brain with drugs that we believe he is either allergic or sensitive to leading to multiple complications. No one would investigate, despite my repeated requests.

Because he came home when so many did not, it is hard NOT to see this as a story of ‘good’ medical care winning over evil, or at least surviving what seems like very poor, immoral, and negligent medical choices. We are still trying to come to terms with whether the negligence and injuries are outweighed by the fact that he is alive. The Divine intervention by Divinely placed medical personnel, along with the other ‘spiritual net’ elements, offered us both a support network and ‘miracles,’ that without which, neither of us would probably have survived this experience.

Two weeks before he came home, I had a discussion with the ‘liver specialist’. When I asked why no one had investigated the cause of his debilitating and sleep depriving itching (called ‘pruritus’), often with only 20 minutes of sleep at a time, which existed from January 2022 until August 2022, the paraphrased condescending response amounted to: they/she did not believe he was going to make it or survive…it wasn’t worth the effort or resources. Because the 5 days of ‘coordinated effort to demoralize me’ had never been explained or even acknowledged, my intuitive fear for his well-being was jarred into vigilant status again and I almost lost my mind.

It will be 2 years in May 2024 that he has been home. He is not on any pharmaceuticals and his liver lab numbers seem to be slowly moving into the normal range, though the current numbers might just be his new normal. His vision is still wonky and his mobility is hampered by the vision disabilities combined with a second insult to his brain which was found in the left parietal region, impacting his right side. No one knows when this stroke occurred. I suspect it took place during the ostomy bag incident or after the first 3 weeks of January 2022 when he was given the chemical stew leading to the drug-induced psychotic state of intense agitation, aggression, and irrational behavior, sending him back to the ICU.

I had so many healthcare workers whisper things to me that no co-workers could hear that I concluded that people genuinely cared that Jeff could make it out alive, but did not dare speak up in front of others….it did not seem like a safe place to work. It was not until he came home and I started going through his file that I could put the pieces together. No one has offered any explanations, just a giant void, so the puzzle has come together based on my experiences, Jeff’s medical file, and the things Jeff remembers.

I have offered multiple opportunities to the hospital for explanations:

– I wrote a 20-page document to the head of the VA medical center after being given his name by an employee, with strong encouragement to lay out what had taken place during Jeff’s care. No response.

– I filed an 1151 claim identifying all the drug mishaps and the resulting damage to Jeff’s brain, liver, kidneys, and mobility, complete with a spreadsheet showing the liver labs fluctuations as the medications shifted. All injuries denied and blamed on COVID-19.

– I wrote a detailed, 6-reason, tort claim (law suit), including information I had not known when composing either the 20-pager or the 1151. Those documents were also included as part of the tort claim, and we just received the denial letter. No basis for our claims of wrongdoing was ‘found’, though in conversations with the paralegal, which we taped, he indicated that several actions/inactions we describe were blatantly wrong and inappropriate.

I have no doubts that the doubling-down and denials are what the government feels is necessary to keep the flood-gates from busting open. No one is allowed to acknowledge wrongdoing because so much of it occurred.

We remain exceptionally grateful for those healthcare workers that remained in place, doing the best job they could, in a system that appeared to be turned on its head. Jeff is alive because his path crossed with theirs.

I know that the question I raised earlier about ‘what balances what?’ will continue to come up until enough life has happened that this experience is not so raw. Maybe we will know the answer when he has regained more vision, becomes more independent, or… we have simply adjusted to our new normal…. it’s anyone’s guess.

Thank you for creating a space for sharing. I realized long ago that when a person has an opportunity to share a burden or weight, the more they share it, the lighter the burden can become. I hope more people will utilize this space and lighten their own emotional burdens by sharing their stories.