The first few days after surgery were a blur to me. I remember images, sounds, voices, and pains. But none of what I remember quite makes sense. It was as though I was living in a land that teetered between reality and a strange dream world.
In order to understand those days, I had to rely on stories from friends and family. Below are some of my mom’s thoughts on those first frightful days in the hospital.
August 4, 2000
The next day we wait and wait.
They have drilled holes in the side of his head to insert a halo. “Maybe it will help to straighten things out,” they say.
He is on a rotating bed in the ICU; it goes from left to right. He has been rotating for hours and hours. Finally at four ‘o clock today word came that they will do surgery tonight.
I kissed Joey, the saddest kiss I have ever kissed. We cry. We hold him. We pray. Father Arnold came in this morning for the sacrament of the sick. Joey is scared because he only knew this practice as the “Last Rites.”
At six o'clock they took him away.
Somebody found our neighbors, the Petersons, at their cabin. After they heard about Joey's accident they rushed home to be with us. My best friend Linda was there. Mary and Katie my sister’s were there. Bill Cushman, the president of Joey’s speedskating club was there. There were from so many from different avenues of our lives. There were friends from speedskating, family, friends from school, friends from church, and friends I didn't even know we had. Most of these people didn't know each other, but in an instant they were all best friends holding a vigil for our dear sweet Joey.
We've known Bill Cushman for years but tonight we met a new Bill Cushman. It was to be a long six hours of wait-and-see. Bill's stories about his Grandma and growing up kept us alert and lighthearted through the whole ordeal. We told him it was okay to leave, but he wouldn't hear of it.
Sometime after midnight they called us. It was over. We should come back up to the ICU they told us. They told us that it “went well” along with a bunch of other words that I didn't comprehend. The lips were moving but not much sunk into my head. The only thing that really sunk in was what the surgeon, Dr. Roach, said right before he left. “I'm going to bet on this one.” That sentence keeps me strong.
Robert, the nurse, told us that Joey would sleep until 9 a.m. and that we should go and crash someplace. That lasted less than an hour. At 1 a.m. Joey came to and was going 10 rounds with his breathing tube. Joey had woken up and was trying to get the tube out of his throat. In the process of doing this, he was choking himself. After a few hysterical moments the nurses were able to pull the breathing tube out of Joey.
Later on that night Joey had another hysterical breakout. He screamed, “Get those evil witches out of here, get those witches out of here!” He begged and begged me. I had no idea what he was talking about. He continued to scream, “Get those damn witches out of here, get those damn witches out of here!” He also used vulgar words I've never heard come out of his mouth.
I felt so bad for my son, I didn’t know what to do. He screamed, “Why are they trying to kill me?” It wasn’t until hours later into the hysteria that we finally realized what was bothering Joey. There were small decorative angels that were placed at the foot of his bed. The morphine along with God knows what other drugs had made him think that this angel was a witch that was out to get him.
Nurse Robert, who had a bit of a feminine demeanor, was assigned to give Joey suction later on that night. What this suction involved was sticking a plastic tube up Joey's nose and then sneaking it down the back of his trachea into his lungs and then sucking the mucus out of them. Joey wanted no part of this. Robert tried over and over to try to get the tube into Joey's lungs, but Joey would thrash wildly when he would make the attempts. Finally Joey lost it and screamed as loud as he could with his partly paralyzed voice, “I hate you. I hate you,” at Robert and then turned to the rest of the hospital and yelled, “get this fag out, I don't want this fag in my room ever again.”
They gave up. The ventilator and his suction tube came out and they stayed out. And coincidentally Robert stayed out too. I slept in the lounge, Bob slept in the chair next to Joey's bed.
August 5, 2000
Our neighbors, the Johnsons, brought us all fruit and breakfast from McDonald's. It was absolutely wonderful.
Joey doesn't remember anything from last night. That is probably for the best. The nurses assured me that last night was probably just the drugs talking. Today he is dear, sweet and appreciative for everything. He cried and told us that we are all the best and he loves us. And then he thanked us -and everyone- I couldn't believe he thanked us. He thanked us for what little we could do.
Diane Pasquarella returned with a wonderful coffee cake and sweets for all the visitors. Diane was diagnosed with breast cancer a couple of weeks ago. Next week she will begin chemotherapy. We tell her that she should save up her strength for the chemo. But she insists that: “I'm getting my strength from Joey. We are all going to do this together.”
She is such a dear lady. She has gone through two divorces, two previous bouts with cancer, and she just recently fell through a glass table cutting herself so badly that she almost bled to death. And yet through all of this she is still one of the happiest and most positive people I've ever met.
The Next Week
The next week, doesn't make a whole lot of sense to me either. I had so many drugs pumping into me that I had a hard time telling which way was up. I remember trying as hard as I could to figure out the layout of the room that I was in. Was I connected to the lobby? How many people were in my room? How big was my room? I couldn't answer any of these questions.
The drugs were a big part of why I had such a hard time figuring out my surroundings. Another part of it was that I remembered Dr. Beal’s words cautioning me about moving my neck too fast. I refused to move my neck, so I stared straight up at the ceiling for the few hours that I was awake.
Every moment that I was awake, there were constantly visitors in and out of my room. I remember people bringing me wonderful food that I was not able eat. The only thing that I was able to stomach that first week was Jell-O, ice cubes, and my new favorite treat--custard.
My visitors brought me flowers, balloons, and tons of stuffed animals. I was grateful for these things, but what was most grateful for, was their company and support.
Here is my mom's journal from that first week:
August 6-11, 2000
I'm not sure what day the fever came this week. Maybe today. Maybe the next day. But it got high, it got really high. And now his lungs are filling up. Joey is under constant supervision from a respiratory therapist. He's having breathing treatments every few hours. Joey has visitor after visitor. I think they give him strength. His friend from speedskating, Diana, has been up at the hospital almost every day. She said we were like her second family.
This entire week was a blur of high fevers, aches, pains and the ups and downs of intensive care.
The fevers were scary. But what was most scary about the fevers was that nobody knew where they were coming from. Every night I went to bed freezing cold when they took my vitals. Every morning and every night, when they took my vitals I was boiling hot. My fever went as high as 106°. The nurses had never seen anything like it... and when nurses and doctors see something they have never seen before at North Memorial Hospital, they call Dr. Shrock.
Dr. Shrock is like a superstar at North Memorial. He is an infectious disease specialist. When there's something nobody else can figure out, who are you going to call? Ghostbusters? Nooooo… Dr. Shrock.
Dr. Shrock never traveled alone. He was always accompanied by what the nurses and doctors at North Memorial Hospital called—Shrock’s Angels. Shrock’s Angels were a group of blonde female physician’s assistants and nurse practitioners that helped Dr. Shrock solve the problems no one else would dare approach.
They took blood test after blood test. But nothing told them what they needed to know. I didn't have meningitis, I didn't have an infection, and they couldn't see any other cause of my fever. I was an anomaly.
I would go on for weeks with this fever, never finding its cause. The only remedy that I found was bits of ice cubes fed to me by nurses, family, and friends.
It had been eight days since my accident. It felt like I just got there and like I’d been there an eternity. My neck hurt and the rest of my body felt like it wasn’t even there. Every morning I woke up with this fever and I would momentarily forget where I was and what happened to me.
I couldn’t stop dreaming about the accident.
I dreaded nights at the hospital.
I didn’t pray very much before. But I stayed up late at night praying that someway or somehow I would be able to skate again.
Moving is a Pain in the Butt
After spending my first weeks post-injury in intensive care my condition was stabilizing and it was time to move to move to the fifth floor neurological wing. Fifth floor was cramped, hectic, and the staff was overworked.
How was I doing? First of all, I was in a lot of pain. Everywhere from my broken neck to the patchy feelings of sensation that I was gaining all over my body hurt.
Second of all, the nurses were beautiful. There was one nursing assistant that I had a special connection with, her name was Marissa. She was so nice to me! I During my time on the fifth floor I thought of her more as a friend than a nurse. (She came to visit me a few months after I left the hospital. I wonder what she’s doing now?)
Although these nurses were stunning and for the most part nice, I wasn’t always convinced that they knew what they were doing. For example, one afternoon I had an incredible urge like I had to poop. It hurt really badly. I rang my call button for one of the beauties, and several minutes later one arrived. I told her my issue and she grabbed a steel bed pan and placed it under my butt.
I tried and tried to push, with no results. I guess I tried so hard I fell asleep. A few hours later I woke up to an incredible pain in my butt. The nurse removed the bed pan and found the source of my pain.
The bed pan had given me a pressure sore.
I spent the first two nights on fifth floor in the room alone. The third night I got a roommate. I couldn’t really see him too well because I had to stay flat in bed and I was so worried about my neck, but he sounded pretty cool.
Here’s how he ended up being my roommate: A couple of nights before he ended up in the hospital, he was out at a bar and got in a bit of a scuffle. Someone offended somebody about something and the next thing Tony knew, he was fighting off a mob of thugs. The bar was getting out of control, so two bouncers stepped in. Tony said that the last thing he remembered was this huge black bouncer punching him in the face. His jaw was completely shattered. He talked really funny because his jaw was wired shut.
My mom described him as skinny, with long black hair. One morning she gave him a bit of a lecture about hanging out with the wrong group of people. I thought that was pretty funny.
The first night that Tony moved in was one of the worst and scariest nights I had at the hospital. There was a combination of pain and fear. I thought for sure that I was going to die.
I fell into my usual Viccoden and Flexerol induced slumber like every other night, but about two hours later I woke up and I knew something was wrong. My chest erupted in spasms. It felt as though I was being electrocuted. I looked on my chest and the place where I was in spasm was where sticky electrodes that measured my heart rate were. I rang the nurse bell and began to holler. After about ten minutes of ringing and hollering the nurse showed up. I explained that the electrodes were electrocuting me, but the nurse dismissed this and told me that was impossible.
I tried to go to sleep again, but once again I felt the electricity shooting into my chest. I screamed, hollered and rang the doorbell for about fifteen minutes. As I was screaming I saw the nurse walk by our room and deliberately ignore me. Tony noticed her ignoring me too.
Tony wasn’t supposed to get out of bed, because if he did thery were worried that he may jostle something loose in his jaw, and he may have to keep his jaw wired for life. Even though this was true, Tony was so mad that nothing could have kept him in bed. The next time that the nurse walked by, ignoring my yells, Tony got out of bed and parked his body directly in front of the nurse.
“You think this is funny?” Tony asked. “Do you think that it is funny that you left a boy in pain all alone?”
The nurse was shocked that Tony had risked permanently injuring his jaw for a roommate he just met.
A male nurse named Dwayne ran down the hallway to join the scuffle. He probably thought that Tony was going to attack the frail nurse. Dwayne stood in between Tony and the nurse.
“There’s a young man in my room who needs help!” Tony screamed at the two nurses. “If neither of you are going to do anything about it, than I’ll walk around this hospital, with my ass hanging out of this gown, until I find someone who will!”
Dwayne calmed Tony down and came into my room. I explained my chest pains. He looked at my chest and could see all of the muscles that I had worked so hard to develop in the weight room were jumping and twitching. Dwayne helped me to stretch my arms and chest out until I fell back asleep.
When I woke up the next morning I thanked Tony for what he had done for me.
“One more night like that and I’ll break both of us out of this joint,” Tony replied.
A couple of days after I first met Tony, I got out of bed on something other than a stretcher for the first time.
Getting me out of bed was a delicate and deliberate process. Not to mention scary. My neck was still very unstable and I needed to be sure that it didn’t crank too hard to one side or the other or I might have had to undergo another surgery. Before I made any movement I thought about my neck. Not that my neck would have been an easy thing to forget, being that it hurt constantly.
To get me up the nurses placed a sheet underneath me and then rolled a pink cardiac chair that I called pinky next to my bed. At this point, pinky was flat like a stretcher. The bed was then raised so the two surfaces were even. The nurses then slid the sheet from the bed onto pinky and I moved right along with the sheet. They then fasten a few buckles that keep me from falling from the chair. Then they crank head of pinky up a bit and I was in a type of sudo-wheelchair.
My mom and dad pushed me all around the hospital after I got up. One thing I couldn’t understand about the hospital is why there were so many bumps on the ground. Every time pinky went over one of those bumps I had so much pain that it felt like my neck was breaking all over again. You would think the designers of a hospital of all places would create floors with people who have broken necks in mind!
After making a journey through the bumpy hospital I finally arrived at a place where I knew I would be spending a lot of time. In the main lobby of the hospital there was a gigantic fish tank, filled with all sorts of tropical fish. I stared at them for at least a half an hour. My favorite fish was this really strange puffer fish. He mostly swam on the top of the tank and it looked like only one of his fins worked. I called him Strokie, cause he looked like he may have had a stroke. I watched Strokie swim around, gobbling up bits of food, and having just a much fun as all of the other fish.
Since arriving at the hospital I had Senator Paul Wellstone wish me luck, a few days before I had gold medal winning speed skater Dan Jansen call my hospital room and told me to never to give up, and Tour de France winning cyclist Lance Armstrong sent me a post card.
All of these gestures were great and I really appreciated them, but none of them motivated me more than little Strokie.
August 13, 2000
Jonny leaves today. He is going on a speedskating trip today. I can't help but think if Joey is jealous that he can't make the trip to Milwaukee with all of his friends and teammates.
I got in early to the hospital this morning. But when I came in Diana was already in Joey's room. She came up here first to say goodbye to Joey before she left. Soon Jonny and Bob came up and said their goodbyes and they were off to Milwaukee.
Joey’s friends from high school had an afternoon movie scheduled with him. It was planned for one o'clock. Joey was looking forward to it. He asked for a hair wash and a shave. He so wanted a good day.
Then the nausea set in. He was so sick. Dr. Arndt came in. He got an anti-nausea shot and they sent him to the x-ray room to get a shot of his stomach. We were forced to postpone his movie.
At six o'clock we called one of Joey’s best friends from high school, Andy Burk. Andy said that the kids were still looking forward to coming over. At least 10 kids came and they watched The Whole 9 Yards. Joey got up in the cardiac chair he calls Pinky. During the middle of the movie Joey's fever spiked to over 103. Joey wouldn’t give up. He stayed in his chair and periodically called for ice water, ice cubes and cold rags on his face. He was bright red and the nurses and myself asked him if he wanted to go to bed, but he refused.
He finished the movie.
August 14, 2000
“I feel like it's January and I'm skating outside without gloves on,” Joey said, “my hands are so cold.”
I put his hands up to his face and forehead so that he could feel for himself. His hands were very warm. When Dr. Arndt came in he said that nerve damage would send lots of mixed messages into Joey's body. He said that this journal would be a good place to record all of them.
Breakfast went well; we had beautiful strawberries, Honey dew melon, a blueberry muffin and slightly cold oatmeal with brown sugar.Next