We are now 4 days until Colin's Fontan. When Colin was diagnosed with HLHS at 3 days old, we were told about 3 surgeries he would need to survive, but not to "fix" his heart. The first one he was one week old, the second he was 5 1/2 months old, September will be 4 years since that surgery. And now it's time for the Fontan, which has been hanging over our heads for years.
It's a double edge sword, he needs the surgery, he will have more energy, will have pink toes and fingers instead of blue, will have a better time gaining weight and growing. I KNOW he needs this surgery. We have been waiting 4 years to be POST- Fontan, which is a big deal, unfortunately there are many kids who never get to see this stage.
BUT it is EVER so hard to do this again! In the beginning, the first 6 months were a blur. The hospital and lots of doctor appointments`1 was our life and we rolled with the hand we were dealt. BUT we have had almost 4 years of no surgeries, no hospitals, we have lived our lives to the fullest, not letting HLHS decide our life for us.
I look at this 4 year old that goes 1,000 miles a minute and it hurts to know what he is going to have to encounter in just 4 days! It is weighing heavy on our hearts and it is something we are all trying to cope with.
But I have faith in God and in our hospital, I will let my faith carry me in this tough time. I know Colin has so many angels watching over him. Matt's grandparents and my grandparents are the best guardian angels he can. Please say a prayer for a successful surgery and a quick and uneventful recovery. Please pray that this is his last intervention needed on his heart. That these 3 surgeries will be enough for his heart to let him live a full and happy fulfilling life even if it is not fixed.
Please also pray for our heart friend Jacob, who is having his Fontan on the exact same day as Colin, just at a different hospital. And our friend Bodie who is having his on July 29th.
I will be posting updates as we get them on Tuesday, so please watch this or my Facebook page.