Our Lil' Hero: Post Op Day 13

Tuesday, February 4, 2014

Post Op Day 13

Once again sleep overrode blogging day 13 last night, it if Mason didn't have to wake up so early this morning I am sure I would still be out like a light, I can barely keep my eyes open. Mason had a really good day. He smiled a lot, was happier to the nurses, and we went on lots and lots of walks. He had to have his first blood draw since they had to take the line out of his neck. They numbed his arm with cream before so he didn't really feel it but the idea that he was having a pokie made him pretty upset. He got to pick a prize out of the treasure box though so that made it all worth it. It was a hang out kind of day with nothing going on most of the time. Later in the day the Nurse Practitioner came by to asses him and decided to take his stitches out of his chest tube sites on his belly. We went to treatment room and he thought it was pokie time. I love the treatment room so that his room is always a "safe zone", but he sure does hate when we walk into it. The stitches came out easy and painless and he got to pick out another prize. The hope now is that post op day 14 will be the lucky discharge day. Dr. Banka(his cardiologist) came by and said she wants to do a post op visit in 1 week, another in 1 week after that and then we can discuss dates for a cath in 2-3 months here in Boston and we can discuss when we can fly back to our real home. So we will be in Boston for at least 2 weeks after he is discharged and then we will find out if it has to be longer. Here is to hoping day 14 will be the day of discharge!

I took some cute happy pictures of Mason but for some reason they aren't loading today :( I will try and upload them later.

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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.