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.