Transplant - 11 Years Later

Today is a very unique anniversary.

The days between Christmas and New Year spark many memories from our time in hospital with Russell. It is hard to believe it was 11 years ago. So much has happened since that frigid Edmonton morning.

We had just said goodbye to Nicole the previous night, as she and her Grandma boarded a plane back to Winnipeg. We were left feeling very empty with our family separated once again. We woke up that morning expecting another monotonous day at the hospital, but at about 8:00 am we were phoned at our hotel with news that would change our plans considerably.

The phone call where we were told that there was a donor heart available for Russell.

11 years later, it still feels like a dream and not quite real.

Susan asked me last night - after all of these years - how do I feel about the transplant? A question that is not easy to answer.

On the day of Russell’s transplant, one would have expected us to be overjoyed with high fives all around. Yes, we were very excited that the transplant would be a huge milestone, but we had been in the hospital for so long we knew the transplant would not be the end of the story.  To be quite honest, we were worried and scared.  

At this point in time, we knew Russell still had open-heart surgery to implant the donor heart and the recovery that went with it. We were petrified that we were so close to having a successful outcome that something might go wrong. We were not going to relax until the donor heart was in, and we knew that the surgery was a success. 

We never got that confirmation - at least not right away.

We got the call that Russell’s surgery was completed a little after midnight. We met with our surgeon, who did not have encouraging news. The operation was a success, but there were issues with the donor heart. He told us bluntly, “Be prepared for a rough night.”

The next 48 hours, we watched and waited. There were several anxious moments, but very slowly and steadily, we could see signs of recovery. The worst was over, and we could finally get past this initial hurdle, but there were many hurdles yet to come.

January 1, 2009 - 24 hours post-transplant

11 years later, we have many of the same feelings of apprehension and worry, but with each passing year, we have to look back at the many fantastic opportunities that “transplant” has given us and especially Russell. Russell is slowly figuring out his reality of being a heart transplant recipient. It is a lot for a little boy to process. This is a work in progress, but by outward appearances, he looks and acts like any other healthy little boy. He’s currently playing on the computer - playing video games. We consider it a privilege to worry about his screen time rather than his cardiac health.

Russell also keeps things very real. He is a normal little boy and is downright goofy. It is all of his silly antics that keep us on our toes. In the few moments when we have time to think about something like his transplantiversary - we just say, “Wow.” He truly is a “miracle.”

Happy 11^th Transplantiversary Russell

Dear Anti-Vaxxers

Earlier this week, we had an Emergency Room adventure.  In an attempt to keep our immune-compromised son protected from as many infectious diseases as possible, we make it a priority to get him vaccinated. Because of his medical condition, there are some vaccines that he cannot receive.  The MMR (Mumps-Measles-Rubella) vaccine he cannot receive because it is a ‘live’ vaccine.

However, we do make a concerted effort to get him his flu shot.  This is what led us to the Emergency Room this past Monday.

In the past, our son has had a reaction to the flu shot.  We have questioned whether we should still give him the shot. With the advice of no less than five doctors, we have been encouraged to keep doing it. Now we do the flu shot in microdoses.  The shot is divided into 4 microdoses and given in timed intervals.  If the first shot is given and there is no reaction - we proceed with the next shot.  This process is lengthy, and you can imagine how our son enjoys getting four separate shots.

We took this approach last year, and it went very smoothly. There was no reaction.  This past Monday, we did it again.  There was no reaction until the fourth and final shot. After the last shot, Russell’s skin broke out in hives, and he became very agitated and itchy.  The Allergist who was administering the shots provided an antihistamine, and when she felt that was not working, she then administered epinephrine and called 911.

This engaged all of the resources of the Winnipeg Fire and Paramedic Service.  The first to arrive at our Doctor’s office was the fire truck, with the ambulance closely behind. Yes, it was overkill.

Susan and Russell were quickly escorted into the ambulance and taken to the Emergency Room at HSC - Children’s. Russell got to operate the sirens, which he did think was rather “cool.”

The purpose of going to the Emergency Room was to monitor the allergic reaction and to ensure there was no rebound effect when the effects of the epinephrine wore off. We were there a few uneventful hours and were released. We went home for a much-needed rest.

The decision to give Russell a flu shot is not unlike many of the decisions that we have to make as it related to his health care. Managing a child with a heart transplant and kidney damage prompts many discussions about the types and effects of the medications he takes. Most of the medications he takes have the potential to do significant harm to him. We are not alone in this situation, this is the reality of anyone who has to manage a medically complex condition.

So, why did we chose to give Russell the flu shot when we knew there was a significant risk that he might have an allergic reaction. After all, the efficacy of the flu shot varies from year to year, and sometimes it’s a good match, and sometimes it is not. It is effectively playing the odds.  So, why did we do it?  Quite simply, because of anti-vaxxers.  

Everyone in our home gets the flu shot, so it wouldn’t be a big deal for Russell to not be vaccinated except for the fact that with the increased prevalence of the population not getting vaccinated (thanks to anti-vax hysteria) we now have to worry about every kid with a runny nose who Russell is exposed to at school. 

We have a long history of having issues with this.  Our children have been quarantined twice due to measles scares in their school and Russell had to endure a 5-day stay in hospital when he contracted Chicken Pox. Being immune-suppressed makes diseases like Chicken Pox and Measles a life-threatening reality. All thanks to the tin-foil hat conspiracy theorists who think they know better.

Will we give Russell a flu shot next year? At this point - I don’t know. We will have to make that decision in the next few months. Just another choice in a long list of options that we have had to make over the years. It is infuriating to have to face this reality knowing that many of these diseases could be mostly eliminated if people would just vaccinate.  

The next time you see a GoFund Me page or a Social Media story about a child with cancer or some significant health malady and you feel a need to support these families?  Perhaps, think about ensuring you and the people around you are vaccinated. You might even prevent getting ill yourself.