Where to begin? I should start with praise and thanksgiving that we are home and Max looks healthy and is back to his happy self. Thank God!
We checked in to Texas Children's, Monday March 5th at 8:00am. This was a really long day. Max was examined by the surgical team of nurses and nurse practitioners. We met with anesthesia and he had blood work done. The only bump was we were sent to the lab to have his blood drawn and they had a very difficult time of finding a good vein. After one very poor and ill trained attempt, I told them I was done and we would talk with the Heart clinic about other options to do his blood type and screen. I'm usually not one to raise hell and complain, but I wasn't going to subject Max to multiple pokes and lots of tears. We did that the first time around and now I'm wiser. When we were finally admitted to the hospital, the vascular access team came and gave Max local anesthesia to numb the pain and proceeded with collecting the blood they needed. Beautiful!
Tuesday morning began early. We were woken up around 5:45am and we were heading to the 20th floor to prepare for surgery by 6:15am. We met with anesthesia again. They gave Max a dose of Versed which is a medicine that essentially makes Max drunk and eases the separation when they take him back. It might have been inappropriate to laugh in such a serious situation, but Max was hilarious. He was pointing at all the nurses and people that were going by and telling them all kinds of things in baby babble. Apparently he's very talkative when he's under the influence. Interesting. He was very animated and had lots of smiles. Edgar and I prayed over him and by 7:00am he was heading back for his second open heart surgery in 10 months. Heavy. It's not easy to hand your kid over to strangers, even when the strangers are very intelligent, caring, and qualified. Neither one of us cried and we felt an immense amount of peace. Again, the power of prayer absolutely carried us through such a seemingly tough situation.
Throughout surgery we were given updates every hour. The updates are like a roller coaster. Because we were not sure what exactly Dr. Heinle (pediatric heart surgeon) was going to do for Max, we were very hopeful with each update to find out what was in store for our boy. We have prayed and will continue to pray that Max's heart will be fully repaired and healed, but with this surgery it was not the case. It's still not out of the realm of possibility because Dr. Heinle left the option open to make a full repair in another surgery when Max is 3 or 4 years old. He received what is called a pulsatile Glenn. In my very basic understanding, they connected the superior vena cava to the pulmonary artery which diverts half of the blue blood directly to the lungs without using his ventricle. His procedure was somewhat unique because they left the option open for superior vena cava (I think) to be reattached if in a third surgery they felt like they could give Max full function of his heart. In other words they didn't want to fully commit to the Glenn and future Fontan route because after these procedures the only thing left for him would be a transplant. We are so hopeful and we will continue to pray that they can give Max full function of his heart!
By 4:00pm, Max was in recovery and we were able to see him. It wasn't quite as intense to see him this time because we were in awe of how big he was. In his first surgery at 6 weeks old, he was tiny and the cords, wires, and tubes consumed his entire precious body. This time he seemed big and strong and honestly I was a proud momma. There's not much I can do to help heal my boy besides loving him and feeding him. I was proud that I had fed him well! I mean, have you seen his double knees and his chunky cheeks? Awesome.
They extubated him later on that night and it was absolutely amazing to hear him cry. With the tube in his mouth, you could see him cry, but you couldn't hear it because it's placed very near or maybe on the vocal cords and it prohibited him from making a sound. One of the unbelievable blessings of all of this is how I constantly feel like I'm getting to meet my son for the first time over and over again. It's incredible. When you've carried a baby for 9 months, nothing is sweeter than hearing your precious child cry when they are first brought into the world. I have the same feeling each time they bring Max out of surgery. When I heard him cry after they extubated him I cried. It was a physical sign that he had made it. It was a loud sign of how hard his body was fighting. And it was a sign of his incredible spirit. Of course he was mad, but thank God he was. Anything different and there would have been a lot of concerns. Pain is weakness leaving the body. And he cried it out because he is incredibly strong. I'm inspired every day.