Today was a really good day. We journeyed down to Texas Children's for an echo cardiogram, chest x-ray, and an appointment with the cardiology team. Max was a champ and was all smiles to the nurses and doctors. Overall, everything was really positive. His heart is functioning well, he's growing well, and we don't have to go back to Texas Children's for two months. That was the biggest surprise to me. I thought for sure we'd be back in two weeks. But his overall health is so good they're going to continue to let him grow and get stronger. We are backing off of his medicine to once a day instead of twice daily.
The plan is still that he will have two more surgeries: the Glenn and the Fontan. The next one will reroute the blood flow from the superior vena cava directly to his lungs. This will cause pressure to his brain and he will have headaches after the surgery, but eventually his body will adjust and he will be fine. The third surgery would then finish the job of the second, where Max will only use the right side of his heart. The doctors mentioned that there is a slight possibility that they could repair the hole in wall of his heart, near the mitral valve, and switch his arteries in the next surgery and Max would have a total repair, but it's not likely. Part of the problem with this option, is the chords that are connected to the mitral valve are tethered in the opposite ventricle. Thus, fixing the hole would affect the chord and therefore affect his valve. Babies with valve issues eventually need transplants. Successful transplants only last, on average, for 14 years.
It's amazing the amount of confidence I receive every time I go to Texas Children's. It's truly an amazing place, and our team of doctors is amazing.
We were basically told that when Max starts to turn blue, we will have surgery. Estimated time until Max turns into a smurf: months. Thank you for the continued support and prayers. There is so much grace and blessings that are coming out of our little man's journey that I can't help but be grateful for his condition. Weird statement, I know, but there is no other way to describe it.