At a little over six months old Tristan was heading back to Children's for his Glenn. We had been told to expect a visit lasting up to 2 weeks so I packed stuff for myself, Scott and Tristan. We had all the goodies, toys, a mobile, an air matress and lots of books and things to keep Scott and I busy. The day before his Glenn was a crazy day. We had a pre-op appointment at 8am at Children's. With the help of my Dad we were at the appointment and Tristan was very entertained. The appointment itself was very quick. We were able to get his blood work done, chest xray and urine test done fairly quickly. Then it was back upstairs to see the CVS Nurse Practioner. She did his exam and told us that we could go hang out in the cafateria or wonder the halls until it was time to visit with Dr. Jonas. This is what makes the day long because you have to wait for him to come out of surgery or finish with his rounds. Luckily for us we were able to see him about an hour after we were done with everything else. The meeting with Dr. Jonas is always fun but a little scarey. To be able to talk to him one on one and have him interact with your child is an amazing thing. He talked about the surgery and the risks and even drew us a picture so we would know what they were doing to Tristan's heart this time around. The would be taking down his Sano Shunt and connecting his Inferior Vena Cava to his Pumonary Artery. Sounds pretty simple and out of the 3 surgeries it is suppose to be the easiest. One of the only major side effects would be headaches. The rate of mortality went down from the Norwood to only about 3%. That was a releif. So I signed the consent form and we were on our way.
With the help of my dad, Tristan and I checked into the Ronald McDonald house to relax before having to be at the hospital for 8am the next morning. Scott met Tristan and I down there when he got off work since he would be off until Tristan was home I figured I could handle the appointment with my dad. That night Tristan just played and had fun. He went to bed as normal without a care in the world. Scott and I on the other hand had a little bit of trouble sleeping. We had had Tristan home with us for the last 5 months and handing him over for surgery was going to be very difficult. I think we managed to fall asleep and get about 4 hours of sleep. The adrenolen hit us as we enter the hospital in the morning. We went back to the surgical waiting room to check in. We signed paperwork again and waited to be called back. Scott's parents, brother and sisiter in law and my Dad were all there with us. My mom was in Florida because they had moved down there a month before hand. We were called back and Tristan was his happy self the whole time. Scott and I kissed him as he was carried back into the OR with the Anesthesiologist. He looked back at us and smiled. That was what I needed to see. Scott and I stood there in each others arms for a few minutes before we made our way out to our family. We were given a pager and told that we would be updated throughout the whole surgery but if there was anything we would need we could call the conseirege and she would get us any information. What we were not prepared for was the time between him going back into surgery and the time they make the first incision. It took almost 1.5 hours. That was how long his 1st surgery took but Scott and I discussed it as we always did before we would get worried. Tristan already had all his lines and IV's before his 1st surgery, they needed to do all that this time. So we went outside because it was beautiful and we could all sit together without being stuck in the hospital the whole time. After about 2hrs we were told the 1st incision had been made, then at 2.5 hours he was on bipass. It wasn't long after that that we received another page that said he was off bypass and to meet Dr. Jonas back in the surgical waiting room for the update.
It w about and hour after that page that we were waiting to hear and see Dr. Jonas. Of course I started worrying that something had happened. Dr. Jonas came in the room with a huge smile on his face and said everything went very well and we could see Tristan in about an hour once they got him in his bed and settled in the CICU. So we waited some more. A huge releif came over us when we saw him being wheeled past us on the bed and into the CICU. He looked amazing and PINK. Once we were able to go back and see him he was starting to wake up a bit. He just looked at us almost as if asking what happened. Scott leaned over the bed and told Tristan what happpened and where he was and he just closed his eyes to rest some more. It's is amazing how much they understand even when you think they are too young. We were not allowed to stay with him at night because they hadn't opened the New CICU yet so at about 8pm after shift change we left him to get some rest and we tried to get some rest but would be back in the morning for rounds.
He had a fairly uneventful night and on Friday(the day after surgery) they started taking lines out. Everything was happening so fast but Tristan was doing so well. By Saturday we were upstairs in his room. We had our own room so it made things a lot easier for sleeping and getting much needed healing rest for him. The weekend was pretty smooth, he was up playing, eating and drinking almost like he was at home. He was almost back to his normal self. Come monday morning after rounds, chest tubes came out and pacer wires were to come out so we could go home on Tuesday. Wait what happened to up to 2 weeks. We were only there 5 days. They tried to get his pacer wires out, one came out the other was stuck a little so they taped tension on it and we would have to be there until Wednesday morning. Wednesday morning came everything was fine and we were out the door. I couldn't believe it. We were also told that after 3 months Tristan could have his hands fixed. I had to slow down for a minute. He was in the clear and stable now as far as his heart was concernd but we could schedule a consult with the hand specialist to have his fingers separated. Wow things happened so fast. We had his post-op appointment and all looked amazing and they were telling us how well he did and how fast he came through this last surgery. The tagged him the poster child for HLHS.
While we were in the hospital we met an amazing family that we are still great friends with today, 3 years later. They were going through the 1st surgery with their daughter. We stayed in touch, made visit until they finally got home. The family support we have at CNMC is amazing. We have met a lot of families and have kept in touch with most. The next surgery would be between 18 months and 5 years old we were told. So we had a year to go thorugh normal baby stuff. Tristan would have his hands fix a week after his 1st birthday. More to come about the time between The Glenn and The Fontan!
