Our Lil' Hero: Same old Same

Friday, March 18, 2011

Same old Same

So nothing that new going on around here. Just loving every moment together and loving how much more personality Mason gets every day! I am amazed at the little guy how fast his strength is coming! He can now lift his head while on his stomach and yesterday he rolled from his belly to his back then last night from his back to his belly, so I feel he is starting to catch up a little! We are still struggling with the dang PICC line, this week it clotted and it has clotted before but you could still flush it you just couldn't get blood back but this time nothing was going in and nothing was coming out so we had to go spend an hour in infusion therapy to get it worked out. My friend Katy has been so great and helps with Ryder anytime I need it so THANKS Katy! You are the best! Tomorrow is the Braveheart run and we are so honored that they picked our family to raise money for their first annual race! I met some of the cadets tonight and they were all so nice! We are still so grateful for all the hard work they have put into this! Mason has a day full of appointments on Thursday so fingers crossed we will come home oxygen free!

My cute litte St. Patrick's Day boys!

Our Heart Hero!

Once again took advantage of a picture while switching oxygen stickers!

2 comments:

Katy said...: Your boys are so cute! And we love being able to have Ryder over!! I'm so happy Mason is such a trooper and doing well! We pray for him everyday still! Love you guys!; March 19, 2011 at 2:09 PM
Summer said...: Mason is so so cute!! Hope the run went well :); March 23, 2011 at 9:26 AM

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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.