[This featured image was shot in January when Mike’s medical records arrived at the door. I even went to the library to check out “The Complete Idiot’s Guide to Medical Terminology,” but then I never had to open it, because I had an army of willing friends that are professionals in the medical community there to go through every page with and for me, as well as those pages that were to come. Nurses, anesthesiologists, and more. By the time we had our final meeting on August 25th with the hospital leaders, those 913 pages plus autopsy and Toxicology reports were sticky-tabbed, scribbled on, and highlighted en masse… and that college-ruled notebook contained pages of questions… questions that I have yet to be able to ask.]

This is a long one. I hope you’ll stay with me. Here we go . . .
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The Standard

I hadn’t remembered the phrase that the first lawyer spoke, “High Level Standard of Care” until it was on repeat during the final meeting with the hospital leaders, when doors were closed and the building of bridges was an option-no-more. You see, I was told when that final meeting began, “I’m not exactly sure why we are meeting with you today, as I can tell you upfront that we will not be able to meet any of your expectations, and we will not be answering any specific questions that you have surrounding Michael’s care.”

I had waited 24 weeks for this meeting.
This was the meeting for them to speak and for me to listen.
This was their moment to tell me what they found to dismiss my observations and the questions that I had given them in prior meetings.
I had remained so careful to not share my opinions openly up to this point to give them every exhausted effort to prove to me that what they had been trying to find in Mike’s body had been discovered.
They simply weren’t saying… anything.

During the two prior meetings, I had poured out as many of my concerns as possible and lifted up ideas and options of how we might be able to work together to advocate for some changes, or to add some of the words that Mike continually expressed into their teaching. We had made it VERY CLEAR that I was not their enemy and that I did not consider them to be mine. That I was committed to their gathering of all of the facts and seeing how I might be able to HELP in areas where bridges between holistic needs and medical care can be built, or in ways to support their materials and assistance toward grieving families.

One of the HUMANITY glimpses that I had seen from the Vice President at the end of my second meeting was when he specifically asked about my children. When I told him how they were handling the loss of their father, his eyes filled with tears.

The Advocate and I had made a full list of areas WITHIN THE HOSPITAL and UNIVERSITY that could benefit from portions of what could be learned from this tragic circumstance. They knew — just like everyone who knows me knows— that I am seeking PURPOSE and not CLOSURE.

Through her conversations with me prior to that day, I had begun imagining myself in a room with doctors who came to work during those 11 days, and being able to forgive them. And thank them. And ask them to grow from this.

[I am an idealist, but the Patient Advocate was also feeding my hopes with hopes of her own. She had a long list in her notebook, including grief-care support, especially in the child category. She told me about people like me who help them in training videos, and her list of possibilities continued.]

Something happened during the 24-week wait, and the only words I received during that final conference session were variations of, “We cannot meet any of your expectations, and we will not answer any of your specific questions unless you seek legal action.”

I couldn’t tell if the CMO was telling me to do so, so that I will GET the answers to my questions, or if he was telling me in order to shut down my questions.

After that meeting, I felt so defeated. My expectations are not out-of-the-world crazy, even setting the ideas in the Advocate’s notebook to the side. Mine were simply in the form of being able to ask… questions. I wanted to TALK to someone from the staff — someone who was well-aware of Mike’s experience — who could talk back to me, through WHY and HOW decisions were made in pivotal moments.

I didn’t care if they were bad or wrong decisions. Obviously, Mike died. I cannot change that outcome. Things went wrong. I don’t think that talking about it is too much to ask.

But in a world where Systems override Sympathies, Policies override Conversations, and Litigation overrides Mediation, my expectations were far too high.

They were not understanding the fact that I was not playing a blame game. I want to understand how the system works in such a way that would allow for those decisions to be considered “right” and “safe.” They were not realizing that my heart extends grace to people who have been educated to DO those things, because they were believing it to be what was needed…
But at the same time, I am passionately desiring that they LEARN from this experience what is sitting before us – quite literally on the table – to learn from, and then for those leaders with influence to TEACH in such a way that these patterns do not continue.

I don’t know the ins-and-outs of this “High-Level Standard.” I am not a doctor, so I was not trained to think from within that framework. But here is what I observed, and my concerns are grave if this standard is not changed.

*** I also believe that people have SO ABUSED the system, that people like Mike and Ami Shroyer in the emergent circumstance — having NOT been working the system, or EVER even having been IN an Emergency Department for a need of this sort — were hidden under the policies that are in place due to the MASSES coming in for stubbed toes, to demand prescriptions, and for other needless reasons. Believe me, when I get to my personal messages to categories of persons, I have much to say to the average American public as well. We as a Nation have allowed the Medical Community to get to this point, and we ALL need to do our part to raise it to a new standard.

I witnessed this “high-level standard” being “high levels of medication.”

I understand that this is the “medical field” but we were not seeking medication; we were seeking breath. We were seeking a simple kind of help. We were seeking, “There is something here, and here, and if can just get this out, then I could breathe, and if I could breathe then I could rest, and if I could rest then I could heal.”
~ Michael Shroyer’s own repeated words from October 18th until November 27th, when the nurse released those two blockages.

In all of the conversations, MEDICATION was given a seat of high honor, so to speak. It amazes me how PROTECTED even discussing medication has become. How quickly words are shut down. How rapidly walls of defense rise up. And how annoyed a doctor or nurse would become when I would hold up a page from my phone with side effects lists.

In our experience, we were not able to CHOOSE the doctor. “Dr. Medicate” flooded Mike — Mike being a man who had not had ANY medications since age 9 — with so many drugs, WITHOUT A DIAGNOSIS, that his body lost the ability to walk, burp, swallow, have fluid muscular movement, no ability to blink or close the eyes, and an internal “burning from the inside out” and “vibrating from the inside out” as Mike kept saying. Yet, while we were vehemently REQUESTING to be removed from under this doctor’s care, no changes were made. We couldn’t make that choice.

Not a good standard.

On the evening of November 23rd [our anniversary], Mike was taken in a rush by the Rapid Response team to the ICU, and I NEED you to understand that scene:

All DAY, Mike was in major distress. From the night of the 20th until now, 3 days later, he had been given drug after drug after drug… IN SPITE of our arguing with the doctor, and in spite of our begging for a different one. [I honestly don’t think he knew what to do with a man who didn’t respond well to meds, and the thought of not using them left him with no other ideas]. This man and we were in such opposition, and now, Mike was at the edge of the bed with my two friends holding up his collapsing body. His eyes were rolling to the back of his head, and he was GUSHING water from his skin in pools. His color was paler than we had yet seen it. He could no longer respond to us with words or verbal reactions.

Even in this, the doctor was NOT hands on, but rather… LOOKING… AT… THE… SCREENS. He kept saying while holding his clipboard, “We gave him ______, and ______, and we gave him _______, and _______.” Then he looked at me and said, “Did he have his Robitussin?”

I literally screamed, “THIS. IS. NOT. A. ROBITUSSIN. SITUATION!”

The Rapid Response Team stopped waiting for the doctor and just began to load Mike onto their bed to take him to the ICU. While they were doing so, “Dr. Medicate” walked out of the room with his clipboard, and shouted back toward the room, “Well, I guess this patient is better for the I.C.U.!”

I had a CNA contact me personally after he found out that Mike had died. He had been trying to work with Mike in that particular room before things escalated to that point. So he saw Mike before this medication onslaught. He said to me, “Your husband should not have died. I held his hand. I stood up for you in the hallway, and I was removed from your room and placed a few halls away to care over another patient. I was told, “Stop listening to them; you are making it worse.”

One of the BEST caregivers we had met was removed from our room. Yet we could not demand a different lead doctor?

Not a good standard.

Until today, I had assumed that that particular doctor was a student. I now know that he was actually an Assistant Professor. When I asked him on the 22nd, “Please tell me why you are putting all of these drugs into Mike,” here is what he told me:

“We are using rounds of broad scope medications and watching his responses so that we can narrow down the possibilities, and identify a diagnosis.”

WHAT? Say that again. Did I just hear what I think I just heard? Because WHEN did THAT become a thing? This is not a good standard. No no no.

Over the next 24 hours, my questions to this man soon became shouts of “Please stop; you are poisoning my husband!” because Mike’s skin literally reeked of poison and he was having such intense reactions. Which led to the scene that I just described when we were finally removed — NOT in a pleasant way or by our simple request, but by the Rapid Response Team from “Dr. Medicate’s” care.

I’m sorry, but when Michael’s leukocytes were reading at barely elevated [11.0-11.6], and four other doctors did not believe he had ANY reason for the types of intense medications that he was being given [drugs for cancer and some of the most potent antibiotics to a man with NO bacteria or cancer cells!?!], when dermatology tests are coming back with results that Michael is showing “drug eruptions within the timeframe of arrival at _______ hospital” and the patient and family — who are to be PAYING FOR THIS SERVICE — are making completely different requests, then this is…

Not a good standard.

I know that the fine print in the admission documents states that we are basically signing over the decisions to the doctor, but Mike was clearly getting worse, and there were evidences to support getting a different doctor in charge of him. We needed one of the ones we met and trusted.

I couldn’t rest because even though the hospital business card states that patients and families are “SAFE” and “HEARD”… I found out fast that we were actually fighting FOR Mike’s life. And there would be no rest or safety in sight.

After being rushed to the ICU, you could say that I was a new and much bolder version of myself than the Ami that I had EVER been.

I was desperately trying to remain calm, but still found the need to walk into the halls when hearing charts being read, and say, “Excuse me. I am Mike’s wife, and I am overhearing your report. What you are reading is not what we said, and I think you need to know what is actually going on with Mike, and what brought us here. Can I please be a part of this conversation?”

In spite of the attempts to correct charts and to have a voice, this “standard” had set this storm into motion, and we were fighting a huge fight for Mike’s life… without being taken very seriously.

The main daytime attending pulmonologist FINALLY made a huge turn. She had already walked Mike through a bronchoscopy on the 25th that did not result in any usable tissues [one reason: not enough moisture], and test after test, culture after culture, screening after screening were all coming back… clear.

She and I had a long open talk one day, and I said to her, “PLEASE listen. I believe that you are seeing the Mike that was rushed here during Rapid Response mode, and drawing your conclusions from that. You have NOT been looking at the Mike that showed up in the ED, just needing to breathe, and being able to point to where he feels the blockages. Now the medications have caused all of this other stuff, and he is going downhill fast, and in every direction. Can you PLEASE stop the medications for a while and get him the rest and nourishment he needs so that you can see what you are really dealing with?”

She agreed to this on the 27th. Some imaging that had been done around 2:00 a.m. revealed the two blockages. She showed them to me on her computer in the hall. I said, “Let me guess; they are here… and here.” [pointing to the two places Mike had been pointing all along].

She sighed, and her head dropped a little, but with a smile, she answered, “Yes.”

*** From October 18th to November 27th, Mike was pointing to two areas of blockage that were increasingly cutting off his air passage. In spite of his own words… In spite of mine… In spite of my taking two doctors in ICU by the hand and gently but physically moving their stethoscopes to Mike’s neck and begging, “Please. Can you listen to right where he is pointing?”… In spite of the humanity… it took SEEING IT ON A COMPUTER SCREEN to believe that it was actually there.

I do not think that this is a good standard.

I grew to LOVE this doctor. And I still think of her and pray for her success.

She was able to attend one of the hospital conference meetings, where she told me afterward, “Ami, my staff was afraid of you.”

Me: “What? Why?”

Doctor: “Yes, they were afraid of you. No one wanted to walk into the room with you and they made me go in every time I was around. [pause] Ami, you asked smart questions. You asked hard questions. Questions that we didn’t have answers for. And that is terrifying to a doctor.”

She and I wept together that day. She let me know that not one day goes by that she does not think about Michael Shroyer. Let me tell you that I believe that even SHE wants to see the standard raised. From a doctor’s vantage point AND from this widow’s… I believe that we ALL want BETTER.

Let me end this post telling you about her HUMANITY:

After she saw those “two hidden pockets of mucous” on the computer screen, she let me know that she was about to leave for a few days. She let me know that she was calling for REST, hydration, and for Mike to do whatever it took to pass the swallow test and move to a private room. She said that she was advising ONLY the medications that he needed to detoxify.

Then she started giving me some lovely words about Mike. I stopped her and asked her if she would say them directly to him. So she and I went into the room, and this was her goodbye:

“Michael. I am so sorry for everything that you are going through right now, and I am doing my best to keep communication clear with all of these teams of doctors. We’re trying to get you out of the ICU and into a regular room.

Mike, once in a blue moon, someone like you comes along and we learn something. I want you to know, you are teaching us.”

She went on to tell him about a professional athlete she had served — a basketball player — who lost all of his muscular strength like Mike was, but how she watched him start to heal and he was able to regain everything that he had lost, and to this day, that man sends her flowers once a year.

With Mike’s sweet spirit, he held her hand and said to her, “I’ll send you flowers.”

Do I believe that these professionals — who have spent their LIVES in their work — got together for 11 days to think up ways to kill Mike Shroyer?

Absolutely not!

Do I think that Mike’s death has something to teach here?

Absolutely YES.

It’s about the standard. It’s about the MORE. It’s about the human touch. It’s about time to find what is lost, and raise it back to life. There are messages as much for everyday people as there are for leaders, doctors, nurses, drug company executives, and caregivers.

It’s also about overcoming what I believe happened to his body, and how he passed the point of no return.

My next post will begin to show how his reports line up with Medication Toxicity…
I hope that you will read along.

Our world is big, but we’ve also gotten smaller with the ability to share information. I am thankful for a group of Europeans and French pulmonologists who have done research and shared findings that read as if I am reading straight from Michael’s reports.

It is through people like these, and unfortunate losses like ours, that maybe we CAN begin to build this bridge…

Thank you.
photo-feb-05-3-36-42-pm
Five days before the first meeting with the hospital, the kids spotted this framed comic cover at Target. There are bridges out, and Superman is on the scene to Champion for the Greater Good. Of COURSE we had to buy it! It hangs in my son’s room along with a piece of hand-painted barn wood that says, “My Dad is a Superhero.”