Our Lil' Hero: Back Again

Tuesday, November 4, 2014

Back Again

We are back in Boston!!! Yesterday we flew in and today we started right into things today with 6 hours worth of appointments, xray, labs, echo, ekg, vitals, consents, and a whole lot of running around to all those different locations. As always Mason was a champ through it all only getting impatient a few times. The ladies at the pre op clinic remembered Mason and he used his cute card to his advantage. He also was so excited to see Dr. Banka, that when he saw her he went on a dead run down the hall to give her a big hug. He will have a heart cath tomorrow to check hemodynamics and possibly try some new medication if his heart pressures and heart rate are still too high. The plan is, as of now, that he will have to stay one night in the hospital but should be able to get out on Thursday. All prayers, and positive thoughts are more than welcome for good results!!

Ready to take off!

Flirting with the vitals tech

Echo

Mason was so excited to see "his puppy"

So excited that we have had to take his picture by it every time we walk by it. And he also talks to it like it is real. It is pretty dang cute.

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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.