Author: boscoj

Spoiler Alert:
I don’t know if we’re going to be able to get through everything we have left to discuss in a single post. It’s not how I intended it. It’s just the way it is. There may have to be a Part III. Consider yourself warned.

Get this. Earlier this week I get a call from someone I’ve known for over 40 years. We hadn’t talked in quite some time, but as it is with good friends, we chatted like time never passed. She had some pretty serious medical issues several years ago, so we were comparing ER and ICU experiences. I mentioned something about how your brain begins to play games with you when you’re seriously ill. She says something like, “Yes! The hallucinations!”

I’m not sure if what I experienced technically qualifies as hallucinations. But it has to be pretty close. It’s not quite like dreaming; but it’s not unlike it either. I could just close my eyes and immediately see visions, but I was awake. In some ways it was kind of like lucid dreaming in that the visions could be slightly – but not completely – controlled. When I opened my eyes the memory of the visions would quickly fade, just like a dream. Then I would spend the next 20-30 seconds trying to figure out where I was and how I got there.

I don’t know about you, but I believe when most people think of hallucinations they’re thinking Grateful Dead dancing bears, talking buildings, or maybe a kaleidoscope with the heads of their high school teachers. My experience has been much less “Whoa man. Check it out.” and much more “WTF!” Most of my visions were of endless dark patterns. Kind of like the beginning of Star Wars‘s where we see the bottom of an imperial destroyer cruising by for what seems like forever. I also saw several fractals made out of elements of nature like leaves and such. (There were also a few horrible things that we’re not going to talk about.) But there were two hallucinations/visions entertaining enough to warrant sharing.

While still in the ER, I was peacefully examining the detailed texture of what was probably a wall inside a 1950s Soviet Gulag. Having had enough of that after a few minutes (seriously, how long can you stare at gray peeling paint before you go insane?) I asked myself to show me something that was “fun”. It took a few moments but I soon found myself inside what was either a small auditorium or something like a large country bar. There was a very old well-worn rounded wooden stage with a heavy dark colored curtain in the back and matching curtains on each side. There was no seating, just a packed general admission area that was full of rock-hopper penguins. On stage was a band of… rock-hopper penguins. From my vantage point I could see the door to backstage. Some penguin groupies were trying to get past penguin security so they could hang out after the show. Way in the back of the hall a few penguin couples were too busy making-out to be bothered with the performance on stage. The whole scene was very happy and comical and I made a mental note not to forget it.

A day or two later, still feverish and feeling like death warmed over, I was hallucinating about swimming with whales. Which sounds pretty cool but actually it’s awfully dark deep underwater and there were a lot of weeds and the vision was giving me some anxiety (did I mention that I once drowned?) so I needed a change. This time I asked myself to show me something that was warm and outside. In my mind I was soon floating over an orange grove in central Florida. Dozens of trees were arranged in nice rows with ample green space in between. It was harvest season; you could see the oranges on the trees amongst the green leaves. There were boxes full of oranges sitting on carts and on the ground. Half-full boxes were under every tree and also haphazardly strewn about. The whole grove was being tended to by about a dozen pandas. There was a panda sleeping in a tree. There was a panda sitting with its back against a truck reading a book. Some were working; picking fruit and pulling carts. But most were just swinging from trees, playing with oranges, or otherwise goofing off.

I have no idea what causes this, but I know it’s not the drugs as I wasn’t on any. All I was getting was antibiotics and something to keep the blood pressure up. While in the hospital I kinda figured it was just a gift from the sepsis. But now hearing from someone else who also experienced hallucinations – who had lost a lot of blood but did not necessarily have an infection – I’m questioning my theory. And no, I have not done any online research on the issue.

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“Don’t believe everything you read on the Internet.”
— Abraham Lincoln

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Anyway, where were we? Tuesday evening. Hospital room. Check.

Exhausted, incredibly unwell, and starving since I hadn’t eaten anything in the last 24 hours (they don’t feed you in the ED,) I just wanted something to eat and to go to sleep. The hospital kitchen closes at 6:30. By the time we got settled in the room it was pushing 7:00. Ugh. I can’t recall – and it really doesn’t matter – if Suzie brought me something from home or I just decided to screw it and not eat. I was happy to be out of the ED and just wanted to relax and get some sleep. Suzie helped me get settled; made sure I had enough blankets and pillows. Then we turned off all the lights, I put on some music on my phone, and I spent the next 10 hours wide awake. (Did I mention the pandas?)

Some time after midnight I realized I missed a text from Bob asking if the doctors had a plan. Here’s my response:

The doctor has looked at me like I was an alien. Asking themselves How is this guy still alive? With his temperature spikes How come he doesn't have brain damage? Then they would very clearly and calmly Go through a plan of action for the next few days With antibiotics and whatnot And then scuttle away. Tonight I got a 103.4 fever. Can't take any more Tylenol for another 2 hours. Governed by idiots

So – as you can imagine – it was not a good night.

With the precision of a finely crafted Swiss timepiece, every morning between 5:29 and 5:30 a nice (slightly older) Polish woman would come in to draw blood. Wednesday morning was no exception. Now drawing blood is a serious process, and thankfully this woman takes her charge seriously. She lets nothing stand in the way of her safely, and efficiently, completing her rounds. I’m confident it is for this reason that every morning without fail the first thing she did was turn on every light in the room. That includes 2 of the Face Melter 3,000s that they had in the emergency room. These are necessary in case CNN needs to conduct an interview with the president in my hospital room. We can’t have shadows streamed all across America.

No sooner did I finally fall asleep than the hospital started to wake up. I’d doze off and it would be a shift change; the day’s nurse would come in and wake me up. Then some doctor on rounds. Then meds. Then the kitchen would call, wanting to know if I wanted to order breakfast. However I couldn’t answer the phone. So it would just ring and ring. Another doctor. And on and on. It was coming up on noon when I figured I’d finally be able to be left alone for a few hours. I got as comfortable as I could, had a big drink of water, and asked the nurse’s assistant to turn off all the lights and close the door. So there I was, chill’n in the dark, eyes closed, reasonably comfortable and again… the phone rings.

We live in amazing times. We carry computers in our pockets. We have self driving cars and we’re on the verge of an incredible leap forward with artificial intelligence. But for some reason we can’t figure out how to notify the hospital kitchen that a person in a room can’t answer the phone.

Anyway. I did manage to get a few hours of sleep. Woke up around 3:00 and saw another missed text from Bob. I responded:

Swing by a church and light a candle. I'm still alive on Friday was a good $2 investment

Seriously.

That’s just how was. Thursday morning I coughed up a Jell-O mold. Had to be put on oxygen. On the positive front, the infectious disease doctor told me that they had isolated the bacteria growing in both my urine and blood. So they were very confident they knew what bug was causing the issues. He also said – for reasons I immediately forgot – that they were doubling the dose of the antibiotic I was receiving. So at least things were should be headed in the right direction.

Still had a fever Thursday evening. During our Friday morning consult, the infectious disease doctor explains that the team of doctors is concerned by the ongoing fever. He says there are only two reasons for the fever to continue: either they have the wrong drug for the bug or there is a secondary infection somewhere that they don’t know about. He’s confident they have the right drug, so the diagnosis is that there is something else going on. He leaves saying that he’s going to put in an order for a CT scan.

Friday passes; no CT scan.

Saturday passes; no CT scan. Wait. Not so fast. Compared to where I was just a few days earlier, Saturday was a pretty good day. Still wasn’t sleeping well. Still running an elevated temperature. But I was able to see a few visitors and certainly felt much better than I did. In the evening I was tired and looking forward to making an attempt at sleeping through the night. Not putting it to chance, I took my tramadol & acetaminophen at 7:00 and asked the nurse to bring me some Ambien at 11:00. At 10:50 the nurse walks in with my Ambien and while she’s a scanning my wristband in walk a couple of guys from transport. “We’re here to take you down for a CT scan.”

Not too busy in radiology at that time of night on a Saturday. I got wheeled into a “waiting area” but when the guys from transport left, I was the only one there. After a few moments two women pop out of the control room somewhere and begin explaining the process. The one talking is about 5’2″ and might weigh 98 lbs. after Thanksgiving dinner. The other one was taller, heavier, but also about 8 1/2 months pregnant. I explained that I’ve had a CT before and am familiar with the procedure. The little one is not convinced; she continues her speech. “Yep. I got it.” She continues. “Understood.” It never ends.

When the lecture on CT procedure is over she politely asks if I have any questions. I just shake my head. She accepts my head movement as a sign it’s safe to move on. With that she very professionally, and efficiently, continues on with, “Okay then. So now were going to roll your bed into the CT room, we’ll get it right across from the CT table, and we’ll just need you to take 2 steps over.” Ugh.

Sunday morning, in walks the doctor from infectious disease, “You have a kidney stone lodged in your left ureter.”

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And that my friends is where we are going to have to leave it for now. In our next installment we have fasting, canceled late-night surgery, and plenty of other exciting things to talk about. You won’t want to miss it!

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As always, many thanks for all of the support.

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Standing chitchat, Sundays at 3:30 Central.
No login or special software required.
Here’s the link: https://jb.jb03.com/call/e35vvpp9.

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I noticed recently that we have a lot of systemic problems in our society right now. We have systemic governmental problems. We have systemic financial problems. We have systemic problems with the distribution of truthful information. And we have a systemic problem with me writing these posts because when I end up in the hospital no one provides an update!

The funny thing is, back in the middle of October I was thinking about what I could provide as an update. Things were progressing nicely. The wounds were healing (albeit slowly.) Didn’t have any respiratory issues. I was generally in good health and felt pretty good. As such, there really wasn’t much to update. So I was thinking perhaps I should write about the accident, or about what I was doing in my life before the accident. But those ideas will have to wait for another time. Because right now we have other things to talk about.

It was Wednesday, November 1. Feeling good – and generally positive – we took a trip downtown to Shirley Ryan for an evaluation on being included in some of their clinical trials. That was kind of a cool experience. They hook up electrodes to different muscles and then put this thing on your head which causes an electrical shock to stimulate the brain in the right spot to activate said muscles. They’re testing to see if there is any connection between the brain and the muscles. The results were in-line with what we already knew: decent connection to the upper arms, some connection to the lower arms, fingers and legs are “inconclusive” (whatever that means.) So there’s that. At least now I’m in their research system for consideration.

That was a good day, and it’s always nice to have a good day.

Thursday afternoon I started to not feel well. Over the last couple of months Suzie and I have figured out that when I’m freezing cold but sweating from the back of the neck it means I’m having a bout of autonomic dysreflexia. It’s a strange gift of the spinal cord injury. The body is in pain somewhere, but the nerves that would tell the brain exactly where are severed. Nevertheless, the bloodstream is flooded with enzymes and neurotransmitters telling the body that something is wrong. So the body reacts.

Laying under a pile of blankets, freezing cold, sweating, temperature of 103.2, blood pressure of 212/160… something ain’t right. Now a person in my condition can basically get whatever pharmaceuticals are requested. I’ve never taken advantage of that; and by and large I have never needed any of the hard-core pain relievers (read opiates.) But there have been a few times when 10 mg of oxycodone would’ve come in really handy. This was one of those times.

Instead we make a cocktail of tramadol, Tylenol, and Advil. While not perfect, it certainly takes the edge off and brings the temperature down. Follow that a few hours later with a double Ambien and 12 hours of sleep, and Friday morning I’m feeling much better. We chalk the whole thing up to being overtired from Wednesday’s trip downtown and maybe I caught a bug or something.

Friday I’m good all day. A little bit of pain in the evening. But nothing like the day before.

The weekend passes with more of the same. Chill. Sweating. Temperature. Thankfully the pain has subsided. So we just figured I got the flu or a cold or something. Although, Suzie does observe that I’m acting a little “goofy”.

On Monday, Bob stops by as he was rolling through town on his way home from Ohio. We have a nice visit. By all accounts I was lucid and holding it together. A little tired perhaps, but nothing out of the ordinary. After Bob leaves I take a well-deserved nap and wake up speaking gibberish. Suzie calls 911.

I don’t know what it means, but Suzie, Clara, and the fire department are pros at getting me out of the house. Clara knows the dog and the cat go in the basement. Suzie puts the ramp in front of front door and moves my bed over to one side of the room. CFD knows that they have to send the engine company with the ambulance just in case they need a couple extra hands. By the time they show up everything is ready to go, which means we can proceed directly to introductions and catching up. “Hi Mr. Bosco. Good to see you again. So what’s going on with you today?”

Here’s a medical fun-fact: high temperature + low blood pressure = infection.

I don’t remember exactly – and I certainly wasn’t thinking clearly – but my recollection is that in the ambulance my temperature was >103 and the blood pressure was around 64/42. While it’s true I don’t remember the exact numbers, I do remember having a conversation with the paramedic about how that blood pressure is actually not terribly uncommon for me. I may, or may not, have said something about just taking a Midodrine and going back home. He may, or may not, have very politely indicated that was not a good idea.

When you roll in by ambulance, you (thankfully) get to skip the waiting room. Suzie tells me that’s a good thing as the waiting area is filled with people who think the Emergency Department is a clinic and that the whole place smells like weed. And the place is busy. So busy in fact, they don’t have enough rooms for all the patients. So they have several positions marked in the hallway where they can keep an eye on you.

I got assigned to position “E” which is in the hallway between Rooms 8 and 9. A nurse comes by, takes vitals, puts in an IV, and hangs a bag of saline running wide open (pushing fluids trying to keep the pressure up.) As Suzie and I are sitting there enjoying the natural chaos of the ED, I notice a security guard slowly pushing a long stainless steel cart. I get Susie’s attention and say, “Hey, you see how that cart’s not a gurney but stainless steel?” Suzie gives me the side-eye as we watch the security guard slowly push the cart into Room 7. As if on cue, the nurse walks up and excitedly says, “We’ll be moving you out of the hallway shortly. We just need to clean up Room 7.”

The goal in the ED is to prevent you from dying. Period. Full stop. The gurney is incredibly uncomfortable, and not at all good for my wounds. There’s a serious lack of pillows and blankets. There is no TV. The monitors are constantly alarming and the room is illuminated by lights which I believe are called the “Face-Melter 3000”. As a result sleep is next to impossible. The best thing you can do is catch 20 or 40 minutes at a crack in between someone coming in to run some test or to tell you that the EKG telemetry is not working right and they need to rip all the electrodes off your chest and start over.

Despite being exhausted I was kind of curious when I awoke to nearly every staff member in the ED shouting, “No. No. No! Sit down! Tina SIT DOWN!” My vision came into focus just-in-time to watch a woman on the far side of the ED standup, take 2 steps forward, and fall forward on her face. As interesting as that was, I was grateful for being able to quickly drift back off to sleep.

However Tina was not done interrupting my sleep that night. It was some time later when a, now restrained and clearly agitated Tina, was shouting “Let me go!” and “Get these restraints off me!” That was followed by an interesting string of profanity. The staff was doing what they could, but it was no use. The more they tried to calm her the more agitated she became. At one point she starts screaming, “I need to get it out of me! I need to push!” The staff was very encouraging, saying things like, “Okay you go ahead and push.” Now I know I was sick. But I know what I heard. It was at this point when Tina shouted, “I’m having a lion baby! I AM HAVING A LION BABY!”

Well, congratulations Tina. I hope you and your lion baby are both doing great. (Now I did fall back to sleep, so I don’t know if any local media showed up to record the momentous event. Maybe it was on WGN or something.)

C’est la vie in the Emergency Department.

My condition was stable but not improving. I was diagnosed with sepsis, an infection in the blood. They suspected it came from a UTI which, again, is not unusual for a person in my condition. They sent urine and blood samples off to the lab to see what would grow. In the meantime they very carefully selected (they guessed at) an antibiotic which should have a high likelihood of success in treating my infection. But they wouldn’t know for certain until the stuff in the lab started growing. That could be 3 or 4 days.

Now because I’m a chronic overachiever and I like to keep things interesting, my belly was distended and hard, and there was a little bit of swelling in my right leg. A few x-rays and a Doppler ultrasound later… it was confirmed that I had the beginnings of a bowel obstruction and a blood clot in the right leg. However those were low priorities compared to the sepsis. They had to take a backseat for a few days while we focused on the infection.

The original plan was for me to move from the ED to the ICU. But I guess no ICU beds were available, so in the emergency room I stayed. Eventually, although I was not feeling any better, I guess my condition stabilized enough to be moved into a regular room. At 6 o’clock on Tuesday evening, 22 hours after rolling into the emergency room, I got to a room on a floor.

And that my friends is how I began my 11 night extravaganza of medical care.

However right now, I’m exhausted. And I won’t be able to get back to this for a couple of days. So I’m afraid that’s just where we have to leave it for right now. But trust me the story is far from over. In our next episode we will cover more about infections, CT scans, night nurses, kidney stones, and other exciting topics. I for one can’t hardly wait.

I’ll try to get the rest of the story done sometime next week.

If anybody wants to subscribe to the email list, use this link: https://jb03.com/medmail/?p=subscribe&id=1.

Please feel free to share this post or the website.

Standing chitchat, Sundays at 3:30 Central. Here’s the link: https://jb.jb03.com/call/e35vvpp9. No login or special software required.

Thanks again for all the support.

Well it’s September. It was not the best of times; it was certainly not the worst of times.

This photo was taken just before Christmas. It’s a selfie. This is as I was waiting for them to transfer me into the ICU. As I recollect I woke up this way. Couldn’t figure out why my right eye was so dry. The combination of medication, low blood oxygen, sleep deprivation, pneumonia, etc. was really slowing me down. It took me a few moments to figure out that I had cold oxygen blowing on the right side of my face. On one hand, you’re not too concerned how you look when you are wheeled into the ICU. On the other hand, you don’t need half your face frozen so the staff up there thinks you had a stroke.

I’ve completed moving all of the posts over from CaringBridge. I like this better (hope you do to.) Project took much longer than I ever expected. The photos of Chicago are all (blatantly) stolen from someone I discovered using Mastodon. The pictures are ordered in a random or haphazard fashion. Any apparent nexus between the photo and the post is purely coincidental. It was a lot of fun to go read the posts and comments from the early days. Many thanks for all the love and support.

So what’s been going on over the last six weeks? As always, it’s been interesting.

We didn’t know it at the time, but when I was writing the last post I had a urinary tract infection. This was causing grit – like fine sand particles – in the urine. They would build up and clog the catheter. Then we would have either (a) leakage, which meant that everything got wet which caused a huge problem for everybody, or (b) there would be no leakage, the bladder would get overfilled so I would end up sweating with a fever, high blood pressure, and a pounding headache. I’m not sure which was worse, but Suzie would say the former. Seriously though, I was pretty sick, couldn’t do much, and it went undiagnosed for far too long.

One of the more serious challenges of people in my condition is that we don’t feel much pain in the paralyzed area. A friend recently told me his “tale of woe” of when he had a kidney stone. Big baby said it hurt like hell. Well for me, I could have titanium golf ball lodged in a kidney and never know it. Here’s a for instance (and my apologies if this is TMI:) over the last few days there’s been a little blood in the urine. We have no idea where it’s coming from. Maybe there is a honey badger crawling around in there. But I don’t have any abdominal pain. Thankfully, I already have a CT scan scheduled for this Saturday. Hopefully it’s nothing. But if there is a golf ball inside one of the kidneys we’ll find out.

While I had the UTI, a couple other conditions came passing through (pun intended.) At one point we’re pretty sure I had the flu. Took a Covid test; it was negative. Then it seems I had a cold or something. Don’t know. Just know there was a lot of coughing. And bizarrely, I experienced a bit of day-night confusion. While not feeling well, I’d take a nap in the afternoon and then not be able to fall asleep at night. Then I would be tired, so I want to sleep a good part of the day. When this gets going, medications don’t really help. I’d down 10 mg of melatonin and 12 mg of Ambien and nothing. Awake and wired for hours.

Here is another “fun fact” about spinal cord injuries: it can be really challenging for the body to monitor, and thus control, body temperature. Maybe I have a little bit of a chill so we grab a blanket. But the chill won’t go away so we grab another. An hour later I’m sweating, but actually still feel cold. When I’m healthy we pretty much have this under control. When I’m under the weather this can be extremely challenging.

Hopefully we have all that behind us now. My life is like an episode of House (a medical drama that ran on Fox in the 90s. Which I highly recommend BTW.) If only we could solve all of my medical riddles in 44 minutes.

So you got an email? I hope you don’t mind but I (also blatantly) stole all of the emails from CaringBridge. It should be one-click to unsubscribe. My plan is to try and write one of these posts every 6-8 weeks. I’ll send an email out letting folks know there is a new post. That’s it. I’m not going to try to sell you car insurance… but if you’re in the market, I gotta guy.

If anybody wants to subscribe to the email list, use this link: https://jb03.com/medmail/?p=subscribe&id=1

Please feel free to share the website. I’m not going to post this on Facebook or Twitter. If you wish to, please go ahead.

We’ve been running an experiment on the Sunday calls. Recently Zoom had a little snafu with their terms and conditions. It seems that they want to save the video calls people make and use the data to train AI. Not saying that’s the truth; saying that there is some confusion on the matter. Nevertheless, I find the whole “big data” thing a little creepy. So I’m testing out a self hosted solution where the calls will not be recorded or even intercepted by big data. There is a learning curve; but I think we got it covered.

Standing chitchat, Sundays at 3:30 Central. Here’s the link: https://law03.com/call/k3coyx4k
Update 10/18/23: The time remains the same however using a new link for the chitchat: https://jb.jb03.com/call/e35vvpp9

I think that’s it for now. The wounds are healing, very slowly. I try to do my shoulder exercises several times every day. It won’t be long and I’ll be able to do the chicken dance.

Thanks again for all the support.

Be kind and be well.

Today was Jim’s first day out of the house. He rode in the Elite Company van down to Shirley Ryan’s rehab center where he had a meeting with his doctor. As luck would have it, while in the doctor’s office he had an Oxygen level drop and had to be suctioned.

Thus, the doctor prescribed some additional things to do with respect to suctioning and his care. He will be getting regular treatments during the day for his respiratory condition.

In addition, it was the first time that he used the new lifting platform that lowered him from the front porch down to ground level. A distance of about 42 inches. This means it is now possible for him to have a van equipped with a ramp and a device that will hold the wheelchair in place during the ride, and be driven to doctor appointments. For that matter, the van could take him to Walmart or Trader Joe’s, or any other place he chooses to shop.

Jim’s old Ford F150 was cleaned and pressed and is now ready for the used F150 market.