Our Super Special Boy with a Super Special Body

I wasn't able to get a post up about our cardiology visit yesterday because it was such a long day at the hospital and we were able to watch Anya's softball game at night from the car. The whole family crashing into our beds immediately followed!

It was a very big day that had been anticipated since December when we started the adoption process. We were at the hospital for nearly 6 hours and Apollo fell asleep during his 2 hour ECHO (which normally takes 30-45 minutes)! Apollo's super special body had our team scratching their heads and staring at the test results and images in disbelief, not quite sure what they were seeing. Many of Apollo's severe diagnoses were confirmed, we added a new big diagnosis to the list, and a great deal is still to be discovered about his amazing, little heart and body. We need additional imaging in Boston next week to really get a full picture of how his heart tick-tocks along with his other organs and where they are located(!). I know multiple family and friends are in medicine or are parents to children with special needs reading this so I'll list what we know as of right now.

Apollo has a single ventricle heart where his right ventricle is nearly non-existent. We're thankful his left ventricle is large and has good functionality because that is the preferred ventricle by cardiologists because it pumps the blood out to the body where the right pumps it to the lungs. Because of this "unbalanced AV canal", he has a VSD and a ASD. A normal heart has a right and a left mitral valve but Apollo has one large central valve. He has pulmonary atresia which means he is missing his pulmonary valve. He has dextrocardia where his heart is pointed to the right side instead of the left and is also located on the right side of his body. And finally (until we learn more next week), he has heterotaxy which affects multiple organs including the heart. We discovered he has multiple spleens and we'll find out where his other organs are positioned and how well they're functioning soon. Heterotaxy can also be genetic so we will have testing performed down the road.

It sounds like a whole lot of scary (and it is!) but we were prepared to hear all of it. As a dear friend wrote me, "you weren't drawn to him because he was the picture of health, but because you were drawn to his soul, something indescribable." I couldn't have said it any better! So let's focus on the good news, shall we?! Apollo's heart has a good "squeeze" function, his aorta looks good with open flow, and he has minimal leakage to his body. Going forward, we will see if his pulmonary veins are big enough to sustain the Glenn procedure which is an open heart surgery to bypass some blood flow to the heart so as to not make it work as hard. Our local cardiologist is guessing his pulmonary veins aren't large enough yet so he would hopefully receive a larger shunt to increase the blood flow so his veins can grow. We are praying that Boston will be able to do some type of intervention next week instead of sending us home because his teeth are in such bad shape. Hopefully we will not have to fix them first since his heart is in critical shape. Our local cardiologist believes he will undergo some type of repair so we will see.

I will post from Boston but will be busy until then with five of the cutest kiddos around who are loving that they are all together! We're going to have as much fun as we can until we leave again so I'm off to the sprinkler! :)