Our Lil' Hero: MERRY CHRISTMAS!!!

Thursday, December 23, 2010

MERRY CHRISTMAS!!!

I'm positive this will be the most precious Christmas we will ever have! Mason has been the best thing that has ever happened to our family. He really made us see what is most important in life and really brought us closer to eachother. It has also made us realize how many people care about our family and and many true friends we really have. Everyone has been so great and giving to our family. It's nice because I am the type that usually wont ask for help but we haven't needed to, people just keep on giving. We are so overwhelemed with the generosity towards our family. We hope EVERYONE has a MERRY MERRY CHRISTMAS!!!

Mason has been dropping is oxygen levels when he sleep so yesterday his Dr. decided to try some blowby when he is sleeping and drops. The first time when he dropped last night it worked like magic, the second time however not at all. So today it was decided to have him be on a nasal canula at night as long as it isn't making his saturations go above 85%. Also at the doctor today he decided to order some physical therapy because his neck isn't as strong as it should be and he only will turn it one way so we have our first physical therapy appointment today. Other than that he is growing like a Champ! He will be 12 weeks tomorrow and he weighs 8lb 8oz, still tiny for his age but growing just as much as they want him to. :)

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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.