This post is a lot happier than the last one. This is the story about how I got transferred to an ICU closer to home, then got “extubated”: I got my breathing tube removed!
My wedding day, and the day of my daughter’s birth, and others are obviously some of the happiest days of my life. But, March 3, 2019 is right up there too, a day I will remember very fondly for the rest of my life. Since I almost died February 5, then about a month later on March 3 is when I feel like I came back to life.
After several weeks in the ICU at St. Michael’s Hospital, I had finished plasmapheresis treatment, and was waiting to be transferred back to the Trillium Health Partners: Mississauga Hospital.
There was a lot of waiting. First, a bed needed to be available at the Mississauga Hospital. Then a medical transport needed to be booked. Then the transfer people had to actually arrive! I think I was on edge to go back for almost 2 days. Eventually I just kind of decided I wasn’t going to get any real hopes up until the transport paramedics were actually at my bedside. There was a lot of waiting as I got updates about the progress. First, I was told a bed was available. My family took home whatever meager possessions and gifts I had accumulated. Then the transport was booked. And then apparently the transport medics got lost or had to wait a long time for an elevator! They were finally at my bedside late in the evening of March 2, 2019.
So, funny story about EKG leads: When monitoring in the ICU, there were a series of wires connected to pads stuck to different parts of my chest. In case you didn’t know, apparently different hospitals, even different units use different EKG machines, so they need different pads, in different arrangements. Also, in case you didn’t know, I have a rather hairy chest. So, each time there was a transition, they had to rip the old pads off, and attach new ones. It’s like waxing! Ouch!! My chest had some interesting bald spots by the end of this transfer.
So, after the ORNGE ambulance team arrived and did the transfer paperwork, they ripped off the old EKG pads and put theirs on. Still crippled, I they slid me onto their stretcher, and transferred all the wires and tubing to their portable equipment. It felt really nice to be wheeled out of St. Michael’s. It felt like something was finally happening.
The ride in the ORNGE ambulance was memorable! I was loaded into the back, and we took off. I could see much out of the back window, but I could see lights, and a clock. I could tell when we got onto the highway. I recognized the Gardiner Expressway. I feel like we were driving very fast. And I don’t think the ambulance had really good suspension because it was a WILD RIDE! I’m glad I was strapped down because it was like a roller coaster. The paramedic in the back with me offered me something to help with nausea, and something to “calm me down”. I declined both. We made it from St. Michael’s Hospital to the Mississauga Hospital in about 20 minutes, which is crazy fast.
Also crazy fast was the transfer from the ambulance to the hospital bed. It was a blur! I recognized the ambulance entrance to the Mississauga Hospital. After my stretcher was unloaded from the ambulance, the paramedics swiftly wheeled me into the emergency area, to an elevator, then into the ICU. In the ICU there was a team of 15-20 people in masks and gloves already standing by. Before I knew it I was in a room, they transferred me to a new bed, and my breathing tube was connected to the new equipment. That whole process from ambulance to bed couldn’t have been more than 2 minutes! And, I needed new EKG leads again! More chest waxing!
The night of March 2 was pretty rough. I was anxious, and had a very high fever. I got covered in ice packs, and they did another “blood culture” where they took a lot of blood. My mother came to the hospital and stayed until about 2:30am.
Now the good part. Starting 7am on March 3rd, a doctor came to see me and said they were going to try to remove my breathing tube. They took lots of precautions. The night before, the Respiratory Therapists had already repeated the “resistance” breathing tests like they did at St. Michael’s. Around 7:30am an x-ray machine was wheeled in.
At about 9:40am, my life changed for the better. The Respiratory Therapist, Ruth, removed the breathing and feeding tubes while my awesome nurse Wewe supported me.
I was pretty scared. What if I couldn’t breathe? As Ruth pulled out the tubes I gave a slight wretch, and finally I could breathe on my own.
After the tube came out, they put me in a CPAP mask to help my breathing. It’s a fairly common medical device now but helped me a lot. It blew air in my mouth. I likened it to being on the windy deck of cruise ship.I smiled very big smiles finally being rid of the breathing tube. Such big smiles that the CPAP mask sometimes slipped.I was coughing a fair bit. A lot of fluids and such had accumulated in my lungs over the month. I finally had a chance to expel them.I got to hold my infant daughter too.
Around noon they tried transferring me to a mask with less oxygen and force. Unfortunately, I started to feel a little light headed and after only lasted 20 minutes and had to go back to the CPAP. I was so disappointed in myself.
Around 2:30pm, the nurse Wewe wanted to get me up and sitting in a chair. To do that safely, they had to take the mask off, if only briefly. I was hoisted with a lift into a nearby chair. Once there though, I didn’t feel lightheaded, and didn’t put the CPAP mask back on. They checked my readings and vitals, and I seemed to be surviving on “room air”. I could speak! I was so, so happy! To be breathing on my own was a massive step. This gave me hope for some independence eventually away from life-supporting medical devices. It was a step towards freedom.
With the tubes out, I was finally able to speak, but my voice sounded incredibly raw. My wife said I sounded like Batman. I later found out I had least one paralyzed vocal cord. We are still not sure if it was from the neurological damage, or the breathing tube, but I was barley able to speak over a whisper. Even a year later, my voice has not fully recovered. The ENT specialist doctor I’m working with has seen improvement, but not 100% yet.
While in the chair, my mother shaved my face for the first time in a month. With the contraption in place to hold the breathing tube, some parts of my face had been covered, so in the ICU they could only shave part of my face. I had developed quite a nasty mustache! I was visited and checked by several doctors. I saw the Infections Diseases specialist months later, and he remembered that when I got off the breathing tube “I looked like crap.” I did lose over 40 pounds, and looked downright malnourished and shriveled-up.
Throughout the afternoon, I didn’t want to go back to the bed. But, I was kind of bored because I had nothing to read, no phone, no TV. Wewe, the nurse assigned to me was awesome and found an old TV with a VHS player that was donated to the hospital. I rooted through the boxes and found a VHS of Star Wars: A New Hope.
While watching the movie, I got to drink juice! My first liquid I had drunk in over a month! They were careful, small sips, but a taste and feeling of thirst quenching I will not soon forget. Of the many things you take for granted, drinking and tasting were two that I never thought of! And, I was allowed to suck on ice chips to get my fluids up too. So I had A LOT of ice chips. Probably too many, because I got REALLY cold later in the evening.
About 6:30pm, they transferred me from the main ISU to the “j-wing” cardio ISU. Even nicer, and the nurse has a window too look in on you, which was reassuring.
I remember in the evening, the nurse was going to give me my battery of medicine which is about 25 pills! It occurred to me that I didn’t have a feeding tube anymore, so I wasn’t quite sure how I would get the pills into me. I hadn’t eaten ANYTHING in a month! The nurse crushed up the pills, and mixed them into some applesauce. It was a odd feeling to eat even semi-solid foods again. I hadn’t had an assessment from a Speech Language Pathologist yet so I had to be very careful.
In the afternoon of March 4, I was “downgraded” from the ICU to a regular unit. My time in the hospital was far from over, but that would be a very different part of the journey, with different ups and downs. More about that in a later post.
Also, ironically, I had signed up for a weight loss grant (as mentioned in this post). If I lost 40 pounds by March 2019, they would pay for my weight loss program. I had been going to the gym and such, but probably wasn’t going to make that weight goal. And, I did lose that weight… but I don’t think almost dying and spending a month in an ICU is an effective weight loss program :p
I shared a post about how I almost died and I was very touched about the positive and supportive comments from everyone. Maybe I’m being reflective because it’s been almost a year since then, but it seems to help me to review what happened to me.
The “code blue” was only the start of a very harrowing journey. That journey isn’t even over yet, but I’m glad I survived several Intensive Care Units (ICU) and can share my experience.
I’ll warn readers again that this could be a disturbing and frightening entry. I had genuine nightmares, anxiety, and panic attacks re-living these memories. I got some psychological help, so I’m starting to feel better about it, but it’s pretty jarring. And I’ll write this little disclaimer that my memory of the ICU is hazy, missing sections, and also full of downright delusions and hallucinations. I like to pride myself on having a good memory, but I was under a lot of different drugs, and my brain stem was dissolving!
I hope you nor anyone you love never has to wind up in an Intensive Care Unit. We are very lucky it is available to take care of patients with the most complicated of conditions. There is almost one nurse dedicated full-time to each patient, in addition to an extensive supporting staff including Respiratory Therapists, Physiotherapists, Nursing assistants, and doctors. And I’m told it’s rare for someone as young as me to have been an ICU. And also uncommon that someone gets out of an ICU and lives to tell the story.
After my “code blue” on February 5, 2019, I was moved to the ICU at the Trillium Health Partners: Mississauga Hospital. I was intubated, meaning they put a tube down my throat right into my lungs so a ventilator could assist my breathing. According to my medical reports my lungs had “failed” . They also installed a feeding tube through my nose to my stomach to get nutrients and medicine into me. And a dozen-or-so other tubes and leads and wires were inserted and attached to me.
From what I’m told I was more or less unconscious most the time. And what I am told, they gave me very high doses of a steroid called prednisone which was supposed to suppress my immune system so it wouldn’t harm me further. It didn’t work and I was continuing to deteriorate.
To save my life, it was proposed that I be given plasmapheresis treatment (or PLEX). In this treatment, my blood is drained and filtered. When it is returned to my body, the plasma is replaced with a synthetic substitute. The idea is that whatever antibodies were destroying my spinal column and brain stem would be filtered out, and I would have a chance to heal. There are apparently only two places in Ontario that did the plasmapheresis I required, and fortunately they were able to take me at St. Michael’s Hospital in Toronto.
I have a big gap in my memory. I remember coming into the emergency room on February 2. The next thing I vaguely remember is being in a bed on what must have been around February 11, right before I was to be transferred to St. Michael’s Hospital. I don’t remember the transfer. My next memory is that I’m at St. Michael’s hospital undergoing my first round of PLEX treatment. It’s some sort of ward and there are many patients around; we are merely separated by curtains. I remember it feeling noisy and much less secure than Trillium. My wife and mother were there. My wife says they felt defeated and exhausted that I had to come to St. Mike’s.
The nurse doing the Plasmapheresis was named Patricia or Patty as many called her. She was a beam of light. She was an older white lady with a serious tan and she loved visiting Florida. She was very positive. She gave my family hope that I could and would get better.
I vaguely remember being very uncomfortable and anxious that first night. It was noisy. I couldn’t get comfortable. There were strange smells and sounds.
The Daily Struggles
Being intubated is very uncomfortable. There is some sort of contraption they put in your mouth so that you don’t bite your breathing tube. But this “guard” chafes and rubs against your throat, roof of your mouth, teeth, and lips.
And you can’t speak, at all. Apparently the tube rests near the vocal cords. In particular, the rubbing against my vocal cords caused other complications later. Not good, but a necessary sacrifice to keep you alive. I would try to communicate by writing on paper. But I had some sort of brain damage and had double vision, so writing was hard. And given my increasing paralysis, often what I managed to write was illegible or very difficult to read.
Breathing was challenging, especially if fluid collected in the tube. When the tube would accumulate fluid, it would feel like trying to breathe through a straw partially blocked by thick mucus. I would often have to ask to for “suction.” Essentially they put a flexible stick down the tube and as they pull it out, they vacuum whatever fluid has accumulated in the tube. I’m supposed to cough while they are doing this to help get the yuck out. This process is painful, feels invasive, and is exhausting. But, I would go through it several times a day, because breathing with fluid in the breathing tube felt like constantly nearly drowning.
Because of the tube, I couldn’t eat or drink anything. My “food” was some protein powder administered directly to my stomach via the feeding tube. A nurse would crush my numerous pills, mix it with some protein powder, and fill a large syringe. That syringe would press that slurry into the feeding tube. I would often feel hungry, because sometimes they wouldn’t feed me because I had scheduled tests that required an empty stomach. I imagined eventually using those syringes to serve drinks or snacks to myself when/if I got out/survived. Between the limited nutrition and atrophying muscles, I lost A LOT of weight; almost 40 pounds!
I couldn’t move much. The physiotherapists tried hard to get me to move my legs, or squeeze a ball in my hands, but I was pretty much crippled lying on my back all day for weeks. They would try to prop a pillow on either side of me to change my position a bit. I had a little strength on my upper body, and could move my arms a bit, but that was it.
I often got thirsty too. The nurses said I should be getting enough fluids though the IV. When I would ask hard enough, they would wet some little sponges on the ends of sticks. These sponges on sticks were the size of little lollipops. I would fumble with my weakened hands to bring a wet sponge on a stick to my lips, and try to suck a drop or two of liquid. Every drop was a struggle.
I remember red socks. The physiotherapists gave me these thick red socks that had grip on the bottom. This way if they tried to make me stand I’d have some traction. Those socks and the hospital gowns were my only clothing for many weeks.
Of course, I was bedridden so I couldn’t go to the bathroom. I had an in-dwelling catheter; a tube that went up my penis into my bladder to automatically and constantly drain my bladder. And I had to wear a diaper for if I ever had bowel movements. Getting your diaper changed as a paralyzed adult feels rather demeaning and embarrassing.
Getting cleaned was a luxury. Being completely helpless, the nurses would sometimes give me some sort of sponge bath. That was nice because I’m sure I smelled from sitting and sweating all day, but it felt rather demeaning feeling so helpless.
I remember the daily routine: Right after the nurses changed shifts there would be the same checks for pupil dialation, temperature, listening to my chest, testing if I had sensation in my extremities, asking if I knew where I was.
I remember the noises. Screams and moans from the dozens of other patients. Constant beeping from the machinery. The pneumatic sounds of the ventilator.
I remember one night, there was a patient who didn’t speak English. She wasn’t allowed to have any water, but kept demanding it, angrily. She was loud. I don’t think I rested much that evening.
And it smelled. I remember they did some sort of colonoscopy on the patient right beside me, separated only by a curtain.
I remember rounds. St. Michael’s is a teaching hospital, so there were medical students still in school, residency, and in different levels of fellowship. During rounds, a gaggle of 20-30 people would noisily shuffle around, bringing their computers on carts with them. They would talk about me, but not to me. I felt like decisions were being made by committee. Someone would report something, and then 2 more tests or scans or something would be ordered.
My wife and mother would visit every day. I know it was a long drive for them to downtown Toronto. And parking was apparently really expensive too. And they would come at nights on weekdays, even when the weather was really bad. It was February and there were some wicked snowstorms. Sometimes they would come only to find me drugged-up and unconscious. Family came from San Diego too to see me. I really appreciated them coming, but when I was lucid enough I wanted to get closer to home so that it would be easier for them.
Throughout the whole ordeal in the ICU, I wasn’t thinking about myself. My biggest concern was that I was such a burden and hardship for my family. I wasn’t thinking about work, or bills, or house maintenance, or TV shows, or politics, or any of that; none of that mattered. I wanted my family to be okay, and for me to do whatever I could to make things easier for them.
Being sick put an incredible burden on my wife. She had our 2-month old infant daughter to take care of! And she had to coordinate my treatment, and take care of all the bills and housework that I usually did. This was an unimaginable challenge and hardship for her.
Some friends visited too. The best man from my wedding visited, but I don’t remember that. And one of my wife’s friends came, and I was a little more lucid by then, even making strained conversation and quips on my writing pad.
I was on a steroid called prednisone to prevent my immune system from causing further damage. Unfortunately, that left my immune system rather disabled, opening me up to all sorts of infections.
I got pneumonia, at least twice actually. That means I had significant bacterial growth and fluid in my lungs. I’m told that they had to “bronch” me often. When they do that they sedate me heavily, then essentially vacuum the puss out of my lungs.
And I had sepsis too, which is blood poisoning. Essentially, the infections were so rampant that my blood was toxic and risking multiple organ failure.
The plasmapheresis treatment was done using dialysis-like ports near my collarbones. With my suppressed immune system, these ports got infected too.
I’m sure a lot of antibiotics were put into me every day.
The pneumonia, sepsis, infections, and others all could have killed me!
I remember having fevers often. 38 degrees and up meant I had a fever. And there was little the nurses could do but try to cool me down. They would put cool towels on my head. Sometimes even ice packs in my arm pits. And almost every time I had a fever, they would do a “blood culture” where it seems to they take an awful lot of blood for testing.
Between the infections, the drugs, and the dissolving brain stem, my memory if my time in the ICU is incomplete. Then perhaps even worst, I have ludicrous delusions, or nightmares in the place where memories should be. My medical records indicate I was occasionally being given Fentanyl, which is suppose to have quite a few side-effects like these.
I remember my hospital bed being on the open deck of some large ship with sails, which was in some sort of really large pool in the hospital.
I remember sipping some sort of peppermint fluid out of an antiquated Old Spice bottle. Apparently that was the treatment for sepsis. And we were all in the food court of some sort of very quiet mall. Of course, I couldn’t have been sitting up, or drinking anything while intubated.
I remember a young oriental doctor with greased-up hair wear a leather jacket doing some sort of throat surgery on me in a closet.
I remember some sort of movie night. Where we were all wheeled into an auditorium of sorts. But I thought it was noisy.
I remember once feeling like the ICU was some sort of underground cave, and as if all the patients and staff were camping or some sort of military deployment.
I remember trying to escape: My hospital bed was on a submarine. The inside of the submarine looked like a lecture hall. I remember looking out a window and seeing the Port Credit Lighthouse, meaning I was closer to home.
I remember another escape attempt, but I’m stuck in a cold, abandoned house. I can’t stand up so I’m stuck in a dark corner. And for some reason there were Respiratory Therapists there to help me.
I remember being stuck in a restaurant, and no one was helping me. And someone was right beside me and kept stealing my blanket. And I was worried I would miss a meeting with my family and the doctors about my condition.
I remember going to some sort of club/lounge. I have no idea how I would have gotten to a booth, but once there I couldn’t move. And while there a physiotherapist was trying to exercise my limbs.
I had a reoccurring nightmare of my own funeral. That’s a whole different story. If you’re reading this, you were probably there.
And the most strange memory I have is the first time they tried to remove my breathing tube. I remember them removing my tube, then the “crowd” of doctors and medical students oohing and asking as if it’s a sports event when my oxygen saturation collapsed. Them it seems like some sort of tutorial when some doctors were teaching younger doctors how to put a breathing tube back in. But in my memory, I was wearing a sweater and pants, which was impossible.
The Fight Over DRILLING A HOLE IN MY NECK
My memory of the failed de-tubing attempt is at least partially fabricated, but the event is somewhat true: At one point the medical team removed my breathing tube, and my oxygen saturation dropped rapidly, and they had to urgently re-intubate me. My family says they weren’t told that they were going to try this.
The plasmapheresis went on every other day for two weeks. At the end of that, my memory becomes clearer and I was more alert. I have better trust of my memories at this point, and I was apparently able to communicate in a more lucid way.
I remember a young doctoral student or fellow talked to me one day. He told me the plasmapheresis was done. I wrote down asking him if it worked and what would be next. He told me it was now a wait and see. Did the plasmapheresis stop my immune system from attacking my spine? And if it did, could I and would I recover?
The week following the plasmapheresis was challenging. I was more lucid and alert, which is unusual for an ICU, but I was still intubated and cripped. This meant I was anxious and uncomfortable.
I remember the physiotherapists trying to get me to sit in a chair and/or stand. They would use a hoist to pick me up and put me in a special, high-backed chair. Getting me to stand was not happening.
I remember a particularly traumatic incident: When transfer me using the hoist, a lot of wires and tubes had to go with me. During one such transfer, the tube for my Foley Catheter got snagged and pulled out, inflated! For those of you don’t know what a Foley Catheter is, be grateful! It’s a tube that goes into the bladder, through the penis in my case. To keep it from falling out, a little balloon inflates in the bladder. With that balloon still inflated, it got snagged and pulled out. There was a lot of bleeding. The nurses desperately paged for Urologists to come and help, but nobody came for over 30 minutes while I was bleeding out. Eventually, the nurse did some makeshift desperate bandaging. If I had had any feeling down there, I imagine it would have been excruciating.
Earlier, I mentioned that muscles atrophied. Not only did my leg and core muscles atrophy, but my breathing muscles did too. With the breathing tube operating my lungs, my diaphragm and other breathing muscles wasted away. They suspect this is why the first attempt at removing the breathing tube failed. The doctors did not want to try again because they were worried I wouldn’t be able to breath on my own, and may not be able to get another breathing tube installed in time. The breathing tube brings high risk of infection, and going on 4 weeks, procedure was to do a tracheostomy.
What’s a tracheostomy? They drill a hole in my throat! Then I don’t need a breathing tube in my mouth, which is more sanitary. But, then I can’t speak, will have trouble eating and drinking, perhaps forever.
Being a little more lucid, I was NOT in favour of this. Me or my family managed to talk to the Respiratory Therapists. They started “training” my lungs again. Essentially, they set the respirator to sort of resist my breathing rather than helping, as a way of exercising my diaphragm. I remember it being quite difficult when doing these “tests”. It’s kind of like constantly trying to blow up a balloon. But I wasn’t doing anything but lying around, so I could focus. After a week or so of doing this, the Respiratory Therapist thought I would be okay to be detubed. The doctors disagreed.
In fact, apparently without my knowledge or my family’s, I was scheduled for the tracheostomy. The night before the procedure, a doctor came and was describing that he would be doing the surgery. I adamantly wrote NO several times on a piece of paper.
Trying to go “Home”
With the the plasmapheresis concluded, these was some talk now of sending me back to the Trillium Health Centre in Mississauga. It wasn’t quite freedom yet, but I liked that idea a lot because it meant less travel for my family. The doctors weren’t sure I was safe for transport. And even if I was, they wanted the intubation to remain during transport.
I remember a group at rounds recommending a lot of tests before transport: Another MRI, a CAT-scan, ultrasound, x-ray, and more breathing tests. The x-ray was because they were concerned about damage to my chest during CPR. And many of the other tests were in the middle of the night because outpatients used those machines during the day.
I have a particularly clear memory of my last MRI at St. Mikes. It was late in the evening, probably about 1am. The nurse had just given me something to “calm me down.” I don’t know what it was, but OMG it was fantastic! I was FLYING HIGH! Then they wheeled me to wherever the MRI machine was. I stayed still in the MRI machine, but whatever drug they gave me made the MRI feel like a rave or nightclub! The MRI buzzing is like the “unce, unce, unce” of a techno beat!
One particular note is that during transfer, there is no breathing machine. They have a tube of oxygen somewhere on the bed, but my tube was connected to some sort of bellows to force air into my lungs. I was apparently lucid enough to operate it myself, so it was tucked in my armpit. But the reassuring part was that I didn’t need it. I remember going several minutes without squeezing it, and I was breathing okay.
Having passed all the tests, I just had to wait for a bed to open up at Trillium before I could be transported. More about that in this post.
Two weeks in and many small muscles are hurting, especially on the inside of my quads and calves. I should have expected this. I have even lectured on the fact that many muscles are only activated during running. I guess these muscles atrophied with everything else during my illness, and the physio, walking, and other exercises have not changed them in over a year.
The shoes I was using for physio have served me well, but are done. I was alternating between two pairs of Brooks Glycerin shoes. They have zero tread left, the colouring has peeled throughout, and the stitching has broken in several places.
Special thanks to Sarah Black. When I was still in the hospital and could barely move my legs, she gave me a Running Room gift card. At the time, buying new shoes running shoes seemed a long way off.
Tonight I performed the unboxing ritual. I adjusted the laces to the right smugness. I savoured the smell; there’s a certain smell to new shoes. I got a feel for the weight and texture. And I marked them with the date: That helps me track them in Garmin Connect and Strava.
The inside of the box says: “These shoes are overflowing with possibilities.” I hope so.