Tuesday, August 5, 2014

You've come a long way baby!

August 5, 2008 will always be remembered as a "perfect" day. Susan and I made the trip to St Boniface hospital in the very early hours and in a few short hours our Russell would be born. From beginning to end it went absolutely flawlessly. This is especially a fond memory considering the train wreck that took place only a few weeks after Russell was born and our 6 month stay in hospital that ensued. The memory of this day had nothing to do with cardiomyopathy, transplants, medication, or any of the medical issues that have become entrenched in our lives. Today is our son's 6th birthday. Especially significant as we were unsure if he would ever see his first. He truly has come a long way. We have much to celebrate and much to be thankful for. Of course this day would never be possible if it had not been for the dozens of Doctors and nurses who cared for our boy. There is also the obvious gratitude we feel to our donor and their family. Last night we dug into our picture archives to reminisce. We looked through our Nicole baby pictures and then our Russell pictures. Susan chuckled as the files are all dated. For Russell we have pictures from august and september then nothing until December. Our hospital pictures have been filed separately. Russell is old enough now to begin to understand some of his "rocky" history. Looking at old pictures like this is one of Nicole's favourite activities but for Russell it is not. We could see him last night curl up on the couch and recoil a little. He was expecting to see "hospital pictures". This is why we separated them. Russell is at an age now where he understands the fear and pain of hospitals. To him this is not a happy memory. He has not put this in the past and moved on; it is still a part of his life. When we share our story, most people hear about how we came home from Edmonton in March of 2009 and many want to hear it was happily ever after. In essence this is when the work began. We have had one issue after another. The transplant was a success, but as any transplant patient would attest, it is what you have to do or how sick you have to be to get there that has a huge impact on later life. Russell's life will forever be a life that involves medications to suppress his immune system to prevent rejection. This is surprisingly one of the least complicated components of his care. Being in a hospital bed for 6 months and being tube fed for almost a year after; that has long lasting effects. Russell still struggles with eating and his development has been all over the map. This week is a great example of our life. Today we are celebrating Russell's birthday and it will be a great day. On Friday we have an appointment with endocrinology. That won't be so fun as Russell is clinging to the growth chart and there is a possibility that we may have to do treatment for his growth. One step forward...two steps back. This is the way it has been for 6 years. Our little boy is complicated; and this is our new "normal". Most stories about a heart transplant imply that once all of the waiting is over and a donor heart is finally located; then you have your perfect "hollywood" ending. That's not quite true. The transplant is an amazing gift but there are many steps leading up to the transplant and a lot to recover from after. This doesn't sound encouraging and may even be a little depressing but we have had many highs and many lows. We have had to learn to adapt to that. Today is a great day...and we will celebrate with our boy. He has changed so much in the last little while; he truly is a real character. We savour these moments as we encounter the challenges ahead. What keeps us going is that every moment we are with our boy we know, in spite of all that we have been through, that his life could have ended a long time ago and we would never have had the joy of getting to know this little character. He is 6, he drives us crazy at times and many people who meet him comment on what a huge personality he has. It would have been a tragedy not to have gotten to know this little boy. Happy Birthday Russell...you truly have come a long way.

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