This last weekend and this week have been pretty long. Friday, my uncle passed away unexpectedly. He was doing his routine work out at a local pool and he drowned. The cause of death is still pending, and I'm not sure we'll ever find out what exactly happened. I don't even know that I've come to terms with his death. It still seems like it's not real. Sunday we traveled to San Antonio to be with my cousins and my aunt. It was a really hard and long day. I got to experience the business of funeral homes, and I'm not sure I care for it. We could only stay Sunday because we needed to get back to prepare for Max's procedure Tuesday. The funeral was on Tuesday and it was very difficult to not be there.
We arrived at Texas Children's at 6:00am. We woke up around 4:30 and were out the door around 5:30. Max woke up almost every hour the night before. He could probably sense my stress. He was not allowed to eat after midnight Monday. I woke and fed him at 11:30. They called us back pretty quickly. We caught the nurses and doctors up with everything that was going on with Max. He had ear infections the week prior, so we discussed his medication and I told them that his ears were clear as of Friday. Around 6:30 they gave him a dose of versed that was described to us as something that would make him a little "drunk" and would ease the separation. (Where was my dose?) Admittedly, he was really cute. He waved to everyone that walked by and became very smiley. We prayed over him and we handed him off to his anesthesiologist. Watching your baby walk through double doors with doctors is not a great sight, but we held it together.
They call you every hour to update you with the progress of the procedure. They said everything really got started around 7:30 and by 10:30 he was finished. They buzz you on a pager when everything is done and you meet with the doctor in a private conference room to discuss everything. Overall, everything was pretty routine and they collected all the necessary information to prepare for surgery. We went up to the recovery room and Max was awake and flirting with a nurse. He blew me a huge kiss when he saw me and that's when the tears came to my eyes. After 6 hours of surgery and a slight scare that we would have to stay over night, we were discharged and went home.
Today we met with the surgeon and it was a deja vu moment. Edgar and I both agreed that our meeting, in regards to information, was the same as the very first time we met with Dr. Heinle. All the options presented to us required opening Max's heart. Most babies that go through the Glenn operation do not have their heart opened mostly because they don't have all four chambers of their heart. The operation reroutes the blood from his head directly to his lungs. It is a set-up for the Fontan in which Max would only use half of his heart. All the information that the doctors have collected shows that there still is a possibility for a full repair and that's what they are going for in this next surgery. It seems unlikely, but if Max can have full function of his heart, they are going to do anything to make it happen. Dr. Heinle said that a full repair would be very complicated. Not words a momma wants to hear, but it's not the first time we've heard this.
This whole process is an emotional roller coaster. The hardest part is trying to keep a level head and not get too excited when they tell us that they are trying for a full repair. I'm always hopeful, and we have been praying for a full repair, but I also have to wrestle with reality. It's hard. Reality is, they can't tell us with certainty what they are going to do until they open his heart. It's hard to prepare yourself mentally when the game plan is not certain. We just have to continue to pray.
Maybe I'm not really facing and digesting all of this because I can't handle it. And maybe I'm just floating along. I sometimes feel guilty about being so happy in spite of everything. Because that's the truth. I am so happy. I am so grateful. And I couldn't ask for anything different. A friend of mine is facing tougher challenges with a pregnancy. In her journey, they had to meet with a cardiologist for her sweet boy in utero. The cardiologist told them that a lot of times people discover their baby has a heart anomaly and they choose to abort. That is something I truly cannot digest. I think about that a lot.