We had our follow up cardiology appointed this past Friday. This was a follow up appointment from the heart cath that was done in January. It went as expected. They would like to do Zachary’s next heart surgery, the Fontan. We asked if we would be able to wait until June so all the boys would be out of school and we can try to get in a little summer vacation before jumping into this next stage in Zachary’s life. Our cardiologist seems to think we should be able to wait till June.
We scheduled a consult appointment with Zachary’s cardio surgeon for the end of March and one last follow up appointment with his cardiologist
David and I were able to attend a heart symposium on the Fontan Procedure here in Scottsdale this past Sunday. It was amazing! It was all day 7:30am-630pm. A fire hose of information. There were surgeons, intensivists, hospitalists, radiologists and cardiologists from all over the world: Germany, the Netherlands, Australia, New Zealand, Boston, Philly, LA, Stanford and many other places.
The topic for Sunday was all about the Fontan procedure and how it affects kids in the short term and long term. Zachary’s heart condition will never be able to be “fixed” without either a heart transplant or some other form of a pump that makes up the left side of his heart which is missing. He is basically living with a chronic disease with no cure.
We learned a TON at this conference and we are still processing everything. (We had dreams that night of Protein Losing Enteropathy, Cyanosis, Chylothorax
This is going to be a long road, as it already has been. We have made it this far by the Grace of God and with that we keep going. As I write this my heart hurts knowing what is coming soon for Zachary. All the unknowns, how will he do during surgery, how will he do post op, how will he do when we bring him home, how will his brothers handle it, how will he do the next ten years, while they have any advancement for when he needs intervention down the road, how will all the other organs do after his blood circulation is changed? Those are just a few questions we now have. We know God has him in the palm of His hands so we try and rest and know whatever happens, it’s for God's glory even if we don’t understand the “why”.