Where It All Started: Chapter 1 in a Patient Story

Sept 11, 2001 is a date everyone will remember.  For many of us who watched video of two airplanes hitting the twin towers we saw the world change in front of our eyes.  We were bystanders to that tragedy. For those who were in New York and had friends and families killed in those attacks the experience was so much more personal.  I have no idea what that would have been like to experience.  I am also sure that each person who experienced that day (first hand) has personal feelings and memories of that day that are unique to each individual.  It is impossible to truly know what it is like to go through something like that unless you are there.

This is the struggle I have every time I try to share our story of what happened on the evening of Oct 2, 2008, but like those who experienced 9/11 our lives were forever changed and we will never be the same again.

The post written below was writedn seven years ago, a few days after we arrived at the Stollery Children’s Hospital. As I re-read this I realize how many more details and experiences I omitted.  Perhaps someday I will re-visit those horrific hours and put them down on paper.  

When I talk about patient experience or the role of the caregiver.  This is what I am talking about.

Posted Oct 9, 2008 12:23am

The events leading up to our “trip” to Edmonton began with a trip to our pediatrician on Wednesday for Russell’s 2 month boosters. Everything went off with no real excitement. That night Russell had a normal feed but promptly threw everything up. Obviously he was not feeling well, perhaps some reaction to the shots.

In the morning (Thursday), Russell had a normal feed and everything seemed to be going well. During the day, he was a little fussy about eating. This continued during the afternoon. Late in the afternoon, Susan began to get concerned as he had not been eating well all day and she noticed a yellow tinge to him. When I got home from work, I tried to feed him as well but he was not interested. At this point in time, we were getting more concerned as he had this yellow colour, was not eating, and was quite lethargic. He had very little energy. We made a few calls and contacted one of the cardiologists who was on call. He suggested that we head to Emergency, as it would just be a good idea for someone to check his vitals and have a look at him. If it was not cardiac related and just a “kid-thing” they would just send us home and that would be the end of it.

We arrived at Emergency around 10:30 PM on Thursday. As expected, when we arrived Russell was nice and pink and looking quite great. We were feeling a little silly for being there, but we told our story to the triage nurse and they found us a treatment room. A resident gave Russell a quick once-over and didn’t seem too concerned (We always have trouble reading Doctor body language). We waited in the treatment room for some time. Russell seemed OK but yet not himself. Periodically a nurse would check on us while we waited for the Doctor on duty to give Russell a look. During one of these visits Russell turned white as a ghost and the nurse observed his sudden change. She quickly called for the resident who was close by and she observed the sudden changes as well. Russell let out a cry that we had never heard before and it was obvious to us that he was in some form of distress. Susan and the nurse settled Russell down and got him comfortable but you could tell everyone was on edge and the ER Doctor was summoned. A quick exam by the ER Doctor and Cardiology was paged for a consult. Dion from the Variety Heart Clinic (Pediatric Cardiologist) was at Emergency very quickly and immediately was concerned about Russell’s condition. He did an Ultrasound which confirmed that Russell’s heart was functioning at an even lower level than at Russell’s last visit to the clinic. He relayed the concern to us and stated that he was in bad shape and that they wanted to get Russell to the ICU as soon as possible.

From this point, things got very bad; very quickly. At about 2:00 or 2:30 AM Russell was being transported down the hallway toward the elevator to take him to ICU when he “seized” or “lost consciousness.” I will always remember the nurse tapping Russell on his chest and calling to him by name trying to get him to regain consciousness. He was immediately whisked into a treatment room and we were asked to wait in one of the family rooms. For the next hour and a half...we waited. At about 5:00 we were allowed to see Russell. The ICU team had begun the process of stabilizing him but at this point he was certainly not stable.
At this point, he was brought upstairs to the Paediatric Intensive Care Unit (PICU). We waited a little while longer until we were brought into his room in PICU. I will always remember the ICU Doctor, standing at the threshold of Russell’s room, arms crossed, and looking totally focused. She directed her ICU team with conductor-like precision. In the midst of all of the activity she took the time to explain all of the efforts being performed to stabilize Russell. The waiting continued. The next few hours involved adjusting medications to get Russell’s vital signs to stable parameters. We did not know how much better Russell would get as we did not know what caused the “episode”. Did his heart give out? Was it something else? We didn’t know.

After we brought Russell into Children's Emergency;
He crashed in the Hallway and was immediately
whisked away to the resuscitation room.
The next time we saw him he looked like this

The next few hours we waited and we began to make some plans to stay at the hospital as we knew we would be there for some time. Things were starting to stabilize but with conversations with the cardiologist we knew plans were in the works to find Russell a bed in Edmonton. We had no idea how long this process may take. We were informed that if Russell’s heart had really given out that Edmonton had capability to provide mechanical assistance to Russell’s heart to help it pump. This would require surgery in addition to a heart transplant that now seemed inevitable.

During the mid-morning we decided to start getting prepared for an extended hospital stay. I went home to get an overnight bag prepared for Susan, so that she could stay with Russell in the hospital. After I went home, Susan tried to get some sleep in a room provided by the hospital. After Susan fell asleep she got a phone call shortly before lunch from the Variety Heart Clinic. She was informed that there was a bed available in Edmonton and that Russell was scheduled to fly out at 1:30 that afternoon via Air Ambulance and that we were to fly out later that afternoon. Susan immediately called me to let me know that we were packing for a little more than an overnight stay. In fact, we were told to be prepared to stay until we got a transplant. To say we were a little shocked was a bit if an understatement.

This began a flurry of activity that found us on a plane heading for Edmonton at 6:00PM that evening and after a layover in Calgary we found ourselves in the PICU at Stollery Children’s Hospital at the University of Alberta Hospital.

At about 10:00PM we saw Russell and saw that he was stable and survived his journey well. After 41 hours with no sleep, we found ourselves in Edmonton with no clear plan and no idea when we might return home. We had a very sick little boy with a failing heart and a daughter 800 miles away. At this point we wished each other a Happy 16th Anniversary and we went to our hotel and went to sleep. The journey had just begun.

Seven years later we are still very much on that journey.  Our life is consumed by health related issues and trying to manage day to day life with some very unique challenges.  I wish we had an ending to this story but I guess that is something to be thankful for.  The pages of our future have you to be written.  It should be interesting.