t’s been an interesting five months of heart checkups for Blaise. He hit the five year post-Fontan surgery this summer, and is entering the new “pre-adult” Fontan clinic that was established at children’s this summer. The goal of this new clinic is to follow the kids who’ve had fontan surgeries done and complete regular tests and exams to keep on top of their single-chamber fragile hearts to look for things that are starting to fail, don’t look right, liver damage etc.
So in July Blaise and I spent two long days getting him evaluated. EKG, holter monitors, echo, bike stress tests, liver ultrasounds, about 12 vials of blood and more. These tests all came out good, and we will repeat them yearly to continue getting baselines. I knew there was a good chance they’d “find something” as we are starting to dive pretty deep into looking at things closer then we ever had. A cardiac MRI was scheduled last Monday for Blaise, a first as well. Unfortunately a few things were seen, including one that’s a more pressing current issue. Today, we had an echo, to try and answer some questions from the MRI. His fontan is made with a plastic vortex tube/shunt. The blood flows sluggishly through this, and there is one area in here that is showing “something”. It appeared on mri, but was hard to determine. The echo today went the same way and hard to determine. They are concerned it’s a blood clot, or it could also be a fold in the shunt. So, we need to determine what it really is. Next step is to do a ct scan with dye contrast that is scheduled for next Wednesday. If that is still not conclusive enough, they will do the exploratory heart cath surgery to determine. They will also potentially fix a few other things noted in the MRI including coiling new arteries that have formed. If it is a blood clot, they will change him from his daily baby aspirin to Coumadin blood thinner the rest of his life (Not ideal at all) to remove the clot.
We are so grateful and thankful God continues to bless us with this miracle Blaise. We are praying that the CT provides answers and that there is not a clot! Thank you for our community of support and prayers- God continues to hear then!
