Life has been busy, but I'm determined to finish out this blog.
We were delayed multiple times before Max finally had surgery. We went through pre-op up until the holding room twice. It was pretty rough. We knew that the reasons for Max being delayed were for other children that were much sicker than Max. In November and December there was a large outbreak of RSV and ICU beds were occupied with those sick heart babies and children. One time we were delayed for a transplant- the ultimate gift of both sorrow and joy. It's all very humbling to see the hospital work and try to take care of so many sick kids and all the while try to schedule necessary and very serious surgeries such as Max's. I ran the gamut of emotions during all of this. I was anxious (I was getting closer to my due date), I was fearful, I was annoyed, mad, grateful, excited (for the idea to finally be done with surgeries for a long time).
Finally, we got the call at the beginning of January that Max had a new date for January 8th. We did pre-op of the third time. It was the third round of blood work, chest x-rays, EKG, meeting with social workers, meeting with the anesthesia team, meeting with the hospital pedatricians, meeting with the cardiologists, meeting with the surgery PAs, talking with Child Life. We questioned every person that walked in the door if there really was room in the ICU and if surgery would really be on in the morning. Each time they said yes. About the 5th time we were told yes, I broke down. It was really happening. My son was finally going to go through the biggest surgery of his short life. His heart was finally going to be "fixed" and life was going to be different, and hopefully better, for him. I cried overwhelmed with anxiety, fear, joy, pregnancy hormones (I blamed them the most!). Because Max was 4, we were discharged to spend the night at home and told to arrive at 6am for surgery. This was a first for us. All the times before we spent the night before surgery at the hospital. We prayed fervently as a family that night. Edgar and I never talked about how much we wanted to say in our prayers. Max is an intuitive kid. He knew he was having surgery, but I don't think he really knew what was about to happen. We talked about it so many times. I explained in very simple terms that his heart needed to be fixed. The surgeon was going to open his zipper and fix everything as best as he could. Then we would stay in the hospital for a while and eventually when everything was all better we would go home again. I was honest, I told him it would be hard. He asked me many times why he had to do this. I just kept telling him it was the way he was born and not to worry because God redeems everything. He said, "Just like after the floods, and Noah saw the rainbow." Exactly. This is your rainbow sweet boy. That night we prayed for everything. We prayed for the surgeon's hands, for his sight, for his strength, for the anesthesia team, for the profussionist, for all of the nurses, for the ICU team, for all of the doctors in charge of his care after, we prayed for a total repair, we prayed for Max, we prayed for God's will. Thy will be done. Thy will be done.
We woke up at 4:00am. We left the house around 5:00am. Max slept the whole way. I fell asleep around the second decade of the rosary while Edgar drove and prayed the entire rosary. We parked and carried Max in still sleeping. We went up the 18th floor and waited to be called back to the holding room. They called us back and it all got started. We signed off on all the paperwork stating we knew all the risks involved. Max had his Texans Battle Red JJ Watt jersey on and he was happy as a clam. He is so brave. Child Life brought him a huge Planes toy. It was the carrier plane named Cabbie. Max was so excited. He played putting his Lightning in and out of the plane. We prayed over him. They gave him the dose of versed (medicine used to ease separation) and he quickly became less aware of what was going on. They carried him back around 7:30 and Edgar and I just sat and watched and cried. It's not normal. It's not normal to watch your kid being carried away without you. You are completely out of control and for the next 12 hours there is absolutely nothing you can do for your child except pray.
We left to stake out our place in the hospital where we would wait. The hospital gives you a pager similar to the ones you receive at restaurants and when it goes off you go back to the waiting room and they will assign you a conference room where the surgery PA will update you with the progress of the surgery. Edgar and I don't typically like waiting in the cardiology waiting room. There are usually a lot of people and you can cut the nervous tension with a knife. We really try to just find quiet places where we can try to find peace. This time we sat in the adjacent Women's hospital in front of huge windows and watched the Houston traffic drive by.
We were paged with updates of exactly when they had him open and he went on the heart-lung machine. The biggest update came around 2pm. This was the update that was going to tell us whether or not he was receiving a full repair or a Fontan.We nervously sat in the conference room waiting to see Mary the surgical physician's assistant. She came in smiling and said that Dr. Heinle was going to go for the full repair. We were in disbelief. She said that he said he had to try. I honestly didn't want to leave the conference room. I wanted to stay right there and wait to see what happened next. We knew from past surgeries to not get our hopes up, but it was hard not to. This is what we had prayed for. He has all 4 chambers of his heart, why can't he use them!? Hours later, longer than the usual update, we were called back again and this time it was a much different update. Dr. Heinle tried to seal the hole in Max's heart, but when they allowed his heart to beat on his own, his mitral valve started leaking large amounts of blood. The full repair was not to be. Mary told us that he was now switching course and going for the Fontan. Mary left the room and we just cried. We talked it all over again and we rested knowing that Dr. Heinle tried and it wasn't what was best for Max. We were at peace because there were no 'what ifs.' By this time is was about 6pm. We ate dinner and waited until we could see our boy. The hours dragged on and we didn't get any updates. Around 8 they said they were finishing up. We went up to wait in the waiting room and they still didn't call us. It didn't dawn on me that something could be wrong. Finally around 10:30pm we were let back to the CVICU. The update was that Max had a hard time coming off of the heart-lung machine and they had to resuscitate him and re-intubate him. He was supposed to come out of surgery ex-tubated because it helps Fontan kids recover faster, but it didn't happen for Max. But there he was, alive, his pulse-ox was well over 95 (a first in his life), and his color looked so good. On to recovery.