Our Lil' Hero: Another Surgical Update

Tuesday, January 21, 2014

Another Surgical Update

We just got another update from the nurse and hopefully the next will be from Dr. Emani! Mason is off the heart lung bypass. They do some testing to check the heart before they take them off and he passed all of those so that is great news! The doctor will close his chest now and then come out and talk to us. The nurse said it will probably be another hour before he comes out. After he talks to us we are looking at another 1-2 hours until they get him settled in his CICU room and we can go back and see him. I hate seeing him covered in wires and tubes and a breathing tube but at the same time I love seeing him. A piece of my heart is missing without my little sidekick next to me. I think we are all anxious to see him. I might to be able to update again until tonight when I go to bed depending on how it goes and how soon we can go wait to go see him upstairs. Today has been a hard but at the same time great day. Hopefully the next update will say my baby's half a heart is finally whole. <3

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A little about Mason

This is a journey through Hypoplasic Left Heart Syndrome (HLHS). Mason was born on October 1, 2010 as what we thought was a healthy normal baby boy. At 3 weeks old we found out when he was life flighted to Primary Children's Medical Center that he was born with an Unbalanced AV Canal Defect that caused him to have Hypoplastic Left Heart Syndrome. He also was diagnosed with 2 Large ASD's a VSD, a CoArch of the Aorta, and a small leaky Mitral Valve. He had his first open heart surgery, the Norwood, in the end of October 2010. After surgery his chest was left open and they surgically closed it a few days later after the swelling went down. He had his second open heart surgery, the Glenn, in January 2011. He did great with recovery and got discharged 1 week later. We had him home for 1 day then he was rushed back to the hospital where they found he had a sternal infection and had to open him back up and wash out all the infection and he had a picc line placed for 6 weeks for antibiotics. He had a couple of heart caths during that time, and echo every 3-6 months, and eye surgery.
In February 2013 we sent his records to Boston to explore different surgical options for him. We found out he was a candidate for a surgery called the Staged Left Ventricle Recruitment to the BiVent. With this surgery it would grow his left ventricle to normal size and then give him normal circulation to hopefully avoid him having to have a heart transplant. (if we didn't go this route we have been told with his anatomy he would need a transplant in his teens). With the help of friends, family, and strangers we went to Boston where he had the first of hopefully only 2 surgeries. He had his 3rd open heart surgery in June and right now his heart is growing and conditioning to be able to handle the load of the work that a normal heart does. He is due to have his 4th open heart surgery in the first of 2014.