Our Lil' Hero: Our First Adventure to Boston!

Finally I am taking the time to sit and go through our first trip to Boston, bear with me this might be quite long. On June 1st we flew out to Boston to have Mason evaluated at Boston Children's Hospital. The kids were so great on the flight there and we got greeted by only the best when we got off the plane in Boston. We got to stay the night at my cousin's who has two cute little boys similar to Ryder and Mason's ages and it was so fun seeing how they played like they have all known each other forever when that was basically the first time they had ever met. 4 little Johnson boys under one roof made for a crazy household but also some amazing memories. The next day we checked into our apartment a few blocks away from the hospital. We were are the 18th floor, it was pretty crazy but had a great view of the city and the ocean in the distance. The next day was a Monday and Mason had pre op all day that day. When you go to cardiac pre op they check the child in then send you on what feels like a scavenger hunt when you aren't familiar with the hospital. They send you to xray then you come back and check back in, then to labs, then you check back in again, then to echo, then you guessed it you check back in.... this goes on until you have completed the list of things that need to be done before the procedure or surgery. That day went really well and we got to meet Mason's cardiologist who we absolutely LOVE! At the end of the day they told us to have him back early that next morning for his Cardiac Cath and MRI. Mason was so cute with everyone and like always everyone fell in love with him instantly. He was super tolerant to everything they wanted him to do. Once he fell asleep they took him back and took us to the waiting room. We got updated every hour and finally after around 7 hours he was done and in recovery. They had to coil a bunch of collaterals in his heart so he needed to stay over night on the step down unit. The night was pretty horrible to say the least, he hated being there and he didn't understand why he couldn't move around. The next morning the surgeon came in to talk to us. It really wasn't the news we were hoping for. In a nut shell Mason was a candidate for the Staged Left Ventricle Recruitment(SLVR) but not a great one. He also was a candidate for the Fontan, but not a great one either. So really he wasn't a good candidate for either of the options that were available to his heart defects. The surgeon kept staying how sick his heart was and he had never done the SLVR on a heart like his. He also said he had a feeling that it would be a good choice for Mason but that is all he had to go off of was a "feeling". He had no data to back up how things would go. With the Fontan he knew things would go great at first but he was sure Mason would be an early post Fontan transplant and with his anatomy he said Mason would be at a higher risk for PLE which would be life threatening. It was our decision, I felt as if I were being told to choose the lesser of both evils. I cried, ALOT. It was terrible. We asked for prayers, we prayed and everyone felt the SLVR was the route to go, except me. I still wasn't sold on it yet. I asked his Boston cardiologist to consult with her colleagues and the other surgeon. I talked to Mason's cardiologist at Primary Children's, at the end of the day half the doctors in Boston said SLVR and half said Fontan. His Primary Children's doctor said there was pros and cons to both but he would be more inclined to say Fontan because it is what he was familiar with. I was left with nothing. All our families and Zac still said SLVR. The only thing I could think was I didn't come to Boston to not go home without Mason. I was lost. We decided the day before surgery, which was still up in the air, to take a fun day out with the cousins and explore Boston a little and go on a thing called the Duck Boats. While we were waiting to get on Mason's cardiologist called seeing if we had decided anything yet. At that point I just blurted out, we decided with the SLVR. I shocked myself a little but it felt right, all the sudden I knew it was going to be okay. We enjoyed the rest of the day and had a blast then went back to our apartment to enjoy some quiet family time before surgery the next day. We didn't have to be at the hospital until the afternoon. Mason hadn't wanted to eat or drink much the few days before but he woke up with an appetite. My mom tried her hardest to help me distract him but he only had one thing on his mind and that was food or drink. He even asked for milk which he doesn't even like, he was a miserable little boy and didn't understand why we wouldn't feed him or give him a drink of water. When we got him to the hospital he wouldn't talk. He just laid on me and kept his eyes closed. They gave him a shot to fall asleep before they took him out of my arms. That was one of the hardest times I have ever had to hand him over. Surgery was long but went very good which was a relief. Then we just had to wait to go back to see him in the Cardiac Intensive Care Unit(CICU). He was intubated and they had him medically paralyzed but he really looked good, considering. They told us to plan on him having a breathing tube for a week, well Super Mason was able to have it taken out 24 hours after surgery, that was such great progress for him! The next day after he got extubated was a little rocky. He ended up needing a blood transfusion but nothing to complain about and it made him feel and look better. Three days after surgery he was moved to the step down unit. He kept doing great and was able to be discharged one week after surgery. A great thing was on his discharge echo, his left ventricle had grown and it was pumping! I really am regretting not blogging while we were there because the days after seem somewhat of a blur. We did some sight seeing and spent family time with our family that lives in Boston. It was such a great experience. From seeing all the historical sights, to the beach, to a Red Sox game, we were in love with Boston. Mason got the go ahead to fly home a week after surgery so after a little over 3 weeks in Boston we were on our way back to Utah. Everything has been going great since we got home. We have a great summer making lots of fun memories. Now it is time to get ready to head back for the big surgery. We fly out in less than 4 weeks and everyday my anxiety goes up a little. Sometimes I wish I could pause time, but I can't. So we prepare to go. Mason is excited to go. He is funny, he is okay with being "cut open" but he is not okay with the idea of having a "pokie". Both boys are excited to be back with family too. I am nervous for the airplane germs. We have officially gone into lockdown mode with Mason at our house and hope to keep him away from the sickness going around. I am also already a mess thinking about Zac and Ryder only staying in Boston a very short time with us, I am so involved with everything Ryder does so I already feel torn and it hasn't even happened yet. But it is only temporary. I am glad my mom will be able to be with me most if not the whole time and Zac's parents will be there for Mason's surgery. For real it is my goal to update his blog with everything in Boston. Every time I blog I love it so I am not sure why I don't do it more often. I will look at it as my New Year's resolution. We hope you all have a good Christmas!! Happy Holidays!