Our Lil' Hero: Quick Update

Wednesday, November 5, 2014

Quick Update

Tired and delusional post: Mason had his heart cath this morning. From start to finish it only took about 2 hours which seems so fast compared to his 6-8 hour surgeries. All of his pressures have slightly come down since his April cath which his team was very happy about. They are still higher than they want them and his heart rate is still high so they started him on a beta blocker to slow things down and help his heart out. Because they wanted to monitor his heart rate in it they knew they would keep him overnight. A new thing they found though is a new narrowing in his pulmonary artery leading to the left side of his heart on top of the atrial stenosis. So that means another open heart surgery is in his future. When his surgeon is back in town he will review everything and discuss whether he wants to fix it now or wait 1-2 years. As long as it is safe, Zac and I are pushing for the 1-2 years idea. We will see what comes of it all later. Now that the heart info is covered, Mason gave his cath team a scare this morning. It is protocol to check a blood sugar before starting and his blood sugar was a measly 34. Normal is between 70-100, so he was very very hypoglycemic. So he got another specialty team now, endocrine was just added to his list of specialists that follow him. Due to not knowing how, why, or when his sugars got so low he is getting his blood sugar checked every three hours until morning, which so far has been a fight. But they want to see at what point it drops and take a bunch of labs at that point to try to figure out what is causing it. Tomorrow we will meet with a nurse and do glucose test training and he will come home getting regular glucose tests. We walked around the unit for a few hours non stop tonight and at the end we got to join up with Mason's new buddy Bronson who had the bivent in July and hasn't got to be discharged yet so feel free to add him to your thoughts and prayers! Mason was super tired by that time so I can't wait for tomorrow so he can play and be happy with his arranged friendship. In the meantime I should sleep while he does because every 3 hours will come quick! Thanks for all the support and kind words, they are appreciated!

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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.