I have re written this post a hundred times in my head since coming home with Ted after his Fontan.
People keep asking me excitedly “so is this it now for Ted? No more surgery?” and I am finding it hard to give an authentic animated response to that question. In part because the truth is both positive and negative. Yes this is it in terms of the Fontan being the final stage in his palliation. Excellent news that there are no more open heart surgeries on the cards for our precious little boy. Amazing news that it appears to have been a success for Teddy. Yes, that is brilliant. But is it?
Is it really great that this is as good as it gets for our son? Now that his single ventricle heart is working as well as it can possibly work, there is nothing else for the doctors to do but to continue to monitor his function and adjust his medications until his heart gets to a point where it can take no more. Nobody knows when this will be and nobody knows what wonders medical science has in store for hearts like Ted’s. Our prayer is for a cure. For the doctors to somehow figure out a way to add another ventricle to these special hearts.
Fontan circulation for some people has been known to last even into their late twenties, and for others it has led to fatal side effects like Plastic Bronchitis or Protein Losing Enteropathy. The two cruel conditions that took the life of an amazing little Aussie boy with HLHS Levi McCormack. His story was highly publicised here and his beautiful spirit touched the hearts of millions. Levi’s wonderful family remain in my prayers, his inspirational mother Karina really is Heaven-sent.
Learning to live without this gut wrenching fear is something to work on over time. Perhaps we will always be looking over our shoulder. It is too soon to tell. Fontan circulation comes with a bag of potential problems and we do not know which kids will fare well, but the work of the Fontan Registry will hopefully provide us with some answers one day soon.
We don’t tell Teddy that the doctors “fixed” his heart, we tell him that they made it “work a lot better than before”. He asked a few days ago if his heart was “still special” and I told him that his heart will always be special even now that he isn’t blue like before… “and even now that I don’t get puffed out doing the minion dance with Monte?” yes Ted, even now.
While Rich and I will keep working on our adjustment to the notion of this being the terminus of Teddy’s treatment, our little Ted will continue to face each day with his beautiful enthusiasm for life. And after all, that is but the job of a good parent. To equip a child with everything they need to achieve their dreams and never ever allow their childhood to be weighed down by the disdain of reality.
See the delight on Teddy’s perfect little face? This was taken last week when his preschool class sent him this teddy bear covered in their well wishes and beautiful drawings. He has taken it to bed with him each night since. Along with his tough pirate, his heart bear, his polar bear and a big bunch of ninja turtles. Just some of the toys Ted received from friends near and far on his journey to recovery.
This week Ted has his first post-Fontan follow up with his surgeon, we have a feeling we will be given good news on his progress. Keep your fingers crossed.
To all of you, our wonderful family and friends -thank you again from Rich and I. We could not have done any of this without all of your love and support. xx