Our Lil' Hero: A Better Day

Thursday, November 6, 2014

A Better Day

Wow, last night was a long night. They woke Mason up every 3 hours to do his fasting glucose tests, which if you know Mason you know how bad he hates pokies. Then on top of the every 3 hour wake ups at one point Mason's heart rate wasn't its normal so they came in and did an EKG, and another time in between those times they came in and they were doing something with his IV's. So needless to say there wasn't much sleep happening. Today was filled with some playing in the playroom, more doctors, and figuring out meds. The conclusion of the low blood sugar is that Mason has a fasting intolerance. Nothing to really worry about from our standpoint unless he is fasting for a surgery or procedure. All the metabolic tests came back just fine so that was a big relief. After going through everything today, Mason was able to be discharged around 3:30 this afternoon. He has been super tired and emotional after everything but wouldn't fall asleep, even during a long walk up to a little shopping village to a trip to Trader Joe's and CVS. Tonight at the house was Dessert with Mr. Dee. Mr. Dee comes every Thursday night to the house and makes some yummy dessert for the house. Mason adores Mr. Dee, and Mr. Dee is so great to Mase. He let Mason help him with the whole cake making and cleaning up, then while it was setting he played a good old fashioned game (invented by Mason and Mr. Dee) of hide the chips. Mason laughed and had such a good time, it was nice to have him not be so grumpy for a minute. Hopefully tonight we will get some much needed rest. He has to go back to the hospital tomorrow for some more appointments, but they should be minor with no surprises!

Dessert with Mr. Dee

Mason and Mr. Dee

1 comment:

Stueller said...: How cute is that and how great is Mr. Dee!; November 7, 2014 at 8:08 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.