Yesterday, just before hitting “post,” I had to push fear to the side. I don’t know if I realize how bold I am being to share all of this. But I DO know a few things:
1) I am not a liar
2) I am not out to hurt and to hate, but to help and to heal
3) when I am not over-thinking, everything prompts me forward in the telling of Mike’s story.

And so I am.

DETAILS MATTER
Today, I just want to talk through the one simple detail of the story [weight] through images that we used in the frames, so that you fully understand what you are looking at. I am going to continue to embed the original video into each of these daily posts, so that you can see the conversations bubbling up under it within Facebook.

{TIP — if you click on the “f” icon in the lower right corner of the video, you will be able to read all of the comments and questions under the original video post. People are way more chatty on FB.}

So many powerful questions and responses have already taken place in these eight hours since I posted it. As I type this right now, there are over 130 shares and over 7,700 views. I’ll be curious to see that change by the morning when this actually posts. [This morning, I awoke to 11,000 views, and counting… I think that’s a good thing, and I am sharing with intentional care, and am NOT flippant in my responses, nor will I be. I am also taking great care in NOT bashing caregivers, doctors, or particular hospital names. This conversation is bigger than any one place, and I respect that. This is about more than Mike. And I appreciate people who are taking time to listen and join the conversation.]

Today, I’m simply going to focus on discrepancies in Mike’s charts. I was SHOCKED when I began to read through the medical records [which is NOT easy, btw!]. The pages are printed and packaged in such a seemingly random order, and I had to call on the pros in my friendship circle to help me read through the categories. This took months.

What was I surprised about?

The differences in the details.

One person’s notes had Mike as a farmer. While one had him as a pastor. These don’t seem like a big deal, but later they changed verbiage that mattered in some important decisions.

Every detail counts.

In all of the records [over 1000 pages to sort through for a man who had not been to a hospital since age 9 for the removal of tonsils and adenoids], there were only TWO doctors’ notes that were truly accurate.

*** I sure do wish they were all as careful! [A great takeaway to those of you who listen and take notes.]

Let’s just use weight as the example, because it’s far less complicated to describe and to display.
One person noted that pt [patient] stated a weight loss of 15 pounds before arriving, and another said 50!?! [his total weight loss] Also included in the random weight loss amounts noted: 5 pounds, 20 pounds, 25, and 40.

So… let me JUST stop right there.
I can easily show you through images I had on my phone [just as I offered to show doctors and nurses as confusion was evident along the way, in trying to help ensure a state of accuracy, and get everyone on the same page], and with these images, you can just see for yourself.

First — Mike spent the majority of his time counseling and ministering. He was a pastor. Not a farmer. On the property, he mowed the parking areas and lawns. He loved being outside. But working the land hard was NOT something he had done around the clock for years, but rather throughout the months of July and August 2015, to prep for a wedding on September 5th.

photo-aug-02-you-can-see-his-weightAugust 2nd, weighing approximately 225 pounds. He felt great, and was working hard.

september-5th-at-wedding-you-can-see-strengthHere is an image from the wedding on September 5th. Still weighing in at around 220. He had lost some weight here, and gained muscle mass, due to 10-14 hour days of hard work. He was tired that day, but felt great.

His breathing patterns changed on September 19th after he was clearing the ballfield for a family event. Wheezing turned to rattles and rales; he had NO pain; he just couldn’t dislodge an aggravating bit of dirt or debris. He could point to two areas — one on his neck around his vocal chords, and the other at the top of his bronchial passages — and he began to not be able to recline fully without it affecting his air passage. No discoloration on tissues. Just clear mucous. And the frustration of not being able to “get whatever this is out.” [He was so particular and methodical, and every tissue was folded exactly the same; they looked like a pile of packing peanuts beside his chair!]

I didn’t have any images of Mike until October 18th, when he had his first trip to an Urgent Care.
He was weighed that day. The nurse asked him to guess his own weight. He said, “Probably around 215.” She said, “You really know your body! 214!”

Wanna see how Mike’s body responded to the shots — particularly to the prednisone — they gave him?
october-27th-still-overcoming-reactions-before-m-wedding This was the BETTER of the images! He made me delete the ones that looked worse, where the whites of his eyes were dark blood red and his bags under his eyes were puffier. His skin rash here is actually diminishing compared to the raised blotches it had shown. In less than a week, Mike was about to marry another couple, and therefore he stopped these meds after five days in order to be able to speak without slurred speech and have clear skin with no stumbling.

Guess what happened? After 3 days, his body was working right again, even though he still had the breathing blockages and labored breath. [These are the kinds of images we showed doctors who would take time to view them along the way, to try to explain Mike’s reactions to medication and his side effects].

Here is Mike at that wedding on October 30th. 12189308_10100611874211189_3250296724006612559_oHe weighed in still at about 215, but you can see his coloring beginning to change.

November 1st, we went to an Emergency Room close to home. It was here that the doctor with a curt bedside manner mocked us for bringing up the side effects that Mike had been having. His exact words were, “You do know, don’t you, that ALL medications have those side effects listed? [pause] Don’t you?”
Exasperated, I replied, “Perhaps they do, but [holding out my phone with the drug names and the effects pulled up to read] we are telling you that Mike did not have these pains or problems UNTIL those drugs entered into his system.”

He told Mike that his slides were fine. X-rays were clear. No pneumonia. That his vitals and blood tests were normal. Then he brought Mike discharge papers, saying that “there is nothing I can do to help you” since Mike was refusing an MRI. In Mike’s left-handed writing, he scratched onto the discharge page, “I am refusing MRI because I cannot lie flat and breathe.”

We left with prescriptions handed to Mike. The meds given to him that day, he had to stop as well. He started losing mobility on his left side. So we went back to nutrition, hydration, herbs, oils, juices, teas, and attempts to rest.

november-9-last-ccNovember 9th. This was Mike’s final day directing our Classical Conversations program, hovering now around 210. Without using the prescriptions, that week, his mobility returned.

On November 11th, Mike actually played in his basketball rec. league! He was hydrating, and he desperately wanted rest; so he hoped that those blockages he could feel might loosen up with activity and that he’d be able to sleep.
That was his last time at the gym.

Here is another interesting fact regarding his hydration levels:
At every appointment — visiting Urgent Care twice and two ER visits [all close to home, and two separate medical facilities/businesses], Mike was complimented on his veins.

“You are every nurse’s dream!” “I wish everyone had veins like yours!”

At two locations, Mike’s blood literally squirted out when he was poked, and a male nurse at the ER on November 18th said to Mike, “Now THAT is something that hasn’t happened to me since I was in nursing school!” Here is the close up of his vein that day. You can see that it was messier than the normal blood draw. And this was just two days before entering the final hospital.november-18-second-er

One more attempt at meds, and Mike lost mobility once again. He had to pinch his lips together to pronounce “p” sounds and “b” sounds. There was no way to stay on those drugs, especially knowing that the tests he had just been given were “clear.” We could not understand this system. No diagnosis. But the ordering of the prescriptions. This made no sense.

* Why did you keep trying the medications?
* Mike couldn’t breathe, and it’s what was being offered.
* Mike actually began asking, “Can’t you get me into a bed, knock me out, and get me safe enough to breathe and rest? I’m sure something could be done while you figure out what this is.”
* There is a specific list in order to get approved for admittance. Mike was never showing anything that would be approved from that list to “get a bed.”
* So, we would go back home. Battling this increasing pressure in those two areas he would point.

In the video, when you see Mike sitting in the passenger seat of the car in the blue sweatshirt, struggling to breathe, we had just been discharged by the ER doctor on October 18th, who told Mike that his “pain was imagined due to anxiety.” I sent that video in a text to my sister-in-law — a nurse in Ohio — and was crying.

I asked her, “Do people get sent home in this condition? Please tell me this is not normal?! Are people actually sent home like this?”

We had our final day and night at home [November 18th and 19th], and the other video I took of his breathing struggle in the gray shirt was less than ten hours before we took him to the final hospital, early on the 20th. You can see in the video that his coloring was now gray, but that his weight and stature were still strong.

* I share all of this because THERE IS NO WAY TO PLACE BLAME ON ONE HOSPITAL. There is no way to place blame on one doctor. The PATTERNS of looking at digits and charts, tests, and images – rather than on the patient – were beyond anything we’d ever imagined.

* Also, medicating with no sure diagnosis — in spite of our show-and-tell of apparent side effects and struggles — this was like playing roulette on Mike’s healthy body. It proved to be more dangerous than we realized, and there needs to be a way to get people to SEE and HEAR when this is happening. Our own words did not bear any weight. And we were growing more fearful and desperate by the hour.

* The other thing that became a noticeable pattern in multiple facilities and by multiple doctors when Mike was spiraling out with meds was this:

“Rate your pain on a scale of 1 to 10.”
“Describe your pain.”

Followed by…
“Your vitals are normal. Your tests are clear. I believe your pain is imagined due to anxiety.”
[anxiety med given.]
This happened so often!

I said to many doctors in the days to come, “You don’t understand! My husband is the guy who calms down everyone else’s anxiety! He is a counselor and pastor; not a farmer. He is handling his pain so well. If he says he’s feeling pain, then believe him.”

So, I will end today’s post with these images, so that you can at least see Mike’s stature, even though exhausted, when we arrived at the final hospital on November 20th. And here he was, hovering around ~200. So, from the first Urgent Care visit on October 18th, he had lost about ~15 pounds. We had no idea that he was about to lose 30-40 more pounds in just 11 days.november-20th-in-er-when-mike-arrived

Takeaways:
* I would love for patients/family members to have access to see chart details in real time, to be able to check for accuracy.
* It would be great to be able to know that reactions to medications are taken seriously.
* Side effects are listed for our safety and awareness. This needs more consideration in the moment.
* If something so concrete as a detail of an occupation title or a described weight loss can be noted so differently, then the intricate details of hospital care around the clock have the potential for much miscommunication. I hope that you are able to see how difficult this would become

Question: How could Mike’s weight at the time of death be 164, and not noticed?
Answer: For two days in the ICU [now Days 4 and 5 of our 11 days], the air conditioning went out, and seven fans were clipped to Mike’s bed. They were not removed when measuring the weight with the button on the bed. [again, digits and gadgets]
Then as Mike began to profusely sweat around the clock — without running a fever — a cooling pad FILLED WITH WATER, was placed atop his mattress.
It was heavy.
Once again… it was not removed in measuring his body; nor was he.
Therefore, his final weight ON THE CHART read 193… when in actuality, he had dropped to a skeletal 164.

With no notice or alarm.

Let’s raise the standard.