This decision has not come easy. Brad and I have researched everything we know how to research. We have talked to ANY doctor that will talk to us! We have prayed and been to the Temple numerous times and what it comes down to is this is what feels right.
So why not Utah is what everyone is wondering right? Let me try to explain... The surgery options presented to us by the surgeons here in Utah: The Glenn procedure NOW followed by the Fontan when Logan is 2 or 3. This would shut his right heart down completely so he would only be functioning on 1/2 his heart. This option would then require a heart transplant down the road. Not to mention a very limited lifestyle activity wise along with risks of Kidney and Liver problems.
From the very beginning we have been optimistic and hopeful that Logan would be able to at least avoid the Fontan because his right ventricle, although small, is still adequate to function some. So when we got the surgery plan back from the doctors in Utah we were devastated to say the least. My heart sunk, and I knew if this really was the road we needed to take we would need to hear another surgeon say there was no hope for his right heart. We sent his case out to 2 of the top surgeons in the country at CHOP and Stanford hoping they may have more experience with anatomy like Logan’s, and also consulted with another cardiologist at John Hopkins. I needed to hear at least 2 doctors agree on the same thing because we were getting different opinions from the doctors here.
We heard back from CHOP within a week, and as Brad relayed to me what the doctors there had suggested for Logan's care I wanted to jump for joy. They felt like they could have him functioning on his right heart. They would repair his VSD (the hole between his ventricles), and if the tricuspid valve is functioning enough they could possibly do a 2 ventricle repair, but likely not less than a 1 1/2 ventricle repair. This is what we have hoped and prayed for. We tried not to get our hopes too high though because again we needed to hear at least 2 doctors agree on the same thing. Stanford took their time getting back to us (an entire month after they reviewed his case), but they came back with the same surgical plan as CHOP. So we have 2 surgeons agreeing on the same thing... GLORIOUS!
Stanford makes more sense logistically speaking, but CHOP feels right. So we are preparing to travel across the U.S. to give my baby's heart the best chance we can.
There is still a lot that can happen in a month. We have a sedated 3-D Echo scheduled for Thursday that will give the doctors a better look at how his tricuspid valve is functioning and if it will be problematic with the CHOP/Stanford surgical plan. We also need some other things to fall into place, but for now this is the plan. It feels good just to have a plan!
Reality sinks in a little more every day. I panic when I think of leaving Ashlyn and Tanner for anywhere from 2 weeks to a month…or more. I know it would be SO much easier to stay in Utah and be able to come home and be close to family. But I also know this is the right thing for Logan.
THANK YOU everyone for your prayers and concern for our family. PLEASE don't stop praying. I KNOW it helps. I will keep you posted on our plans as they become more definite.