As Branden gets closer to his 17th birthday my stomach begins to have butterflies. There’s excitement and fear. Yes he has made it through all the ups and downs. Oh no! soon it becomes the unknowns. This is the year that I made a few realizations.
As he has gotten older I have taken away his protective bubble away. As a nurse once said “Make sure you don’t turn him into a cardio pelagic.” Knowing we had 10 years before his next open heart. I figured it was time to let him and help him grow up.
Then at the end of April we went for his yearly echo. I figured we would go through with flying colours. It’s only been 2 years his since last open heart. But as I saw the echo tech working together, I heard them talking “wow that’s big”. Didn’t know what they meant, but figured I would find out sooner then later. Soon we were waiting for his Dr, where we learned that his new aortic valve wasn’t handling the pressure of the job. Meaning he will need surgery sooner than the 10 years we were told. This is when I realized I can never let go or put my fear away. As the Dr continued to talk, all I could think of was did I make the right choice? Should I of done the mechanical valve or the pig? Was the ROSS the wrong choice?
Then my fear grew, he is almost 17, would his surgery be before he left sick kids? Or would his surgery at 18, 19 be at Toronto General? We do know he can’t go to any other hospital, we know he will need to be followed closely. But his next surgery I won’t be able to be at his side. I won’t be able to sit in the ICU whenever I want. I won’t be able to sleep beside him in 4D. We won’t even know his new Dr. We are starting all over again. This time I won’t be handing over my 9 week old. I will be handing over my young man to a Dr I don’t know or have learned to trust yet. He will be all alone in the trust of nurses we don’t know. My and Branden’s comfort zones have understandably shrunk considerably.
All I know is that I have a ton of worries, so what does he think of all this. At this time I think he is still processing this. He might not know or feel or face it until we say good bye to his Dr that he has had since he was 4. I guess a new chapter of lives will begin.
However I know now that I will always have a time bomb, sometimes I starts to shake, sometimes it starts to spark. But my fear is it will go off. But I often hear how do you do it, specially with 4 other kids. I do it because it’s all know.
Shannon is a regular blogger for Cardiac Kids. To find out more about her click here.
Stay tuned later this week for a post from Melissa