Our Lil' Hero: Today is the day

Tuesday, January 21, 2014

Today is the day

Today is surgery day.

We had a fun weekend together. Saturday was Ryder's 7th birthday. He wanted to go to the New England Aquarium for it and he had a lot of fun seeing the fish and spending time with family. Sunday we moved from the hotel to patient family housing, it is the nice beautiful home in Brookline that has been redone to house families at Boston Children's. The kids have loved it because there is more room than the hotel and more importantly there is a Wii. Sunday night while the kids were playing the Wii an employee asked if we would like to go to a Bruins hockey game, we of course said yes. So on Monday we went to the Garden Arena and the tickets were in an Executive Suite donated by a Boston Bruins player Marc Savard. It was fun to watch the game from the suite and the boys obviously loved the game. It was a good way to spend the day before surgery. When we got back to the house we played Uno and Apples to Apples as a family, Mason doesn't get the concepts of the games but loves that he can play by himself.

Now to today. We woke up at 4:30am to get ready to come to the hospital. Mason was pretty grumpy to be up that early. He wasn't very happy to be going to the doctor again, especially for surgery. It took quite awhile for them to call us back to pre op when we got here and when they did we still had to wait until 8:30 because we hadn't signed consent and his surgeon was in a weekly meeting until then, so Mason played with stickers and watched Mickey to pass the time. Once the surgeon came and we signed consent it was go time. Mason knew and he started to cry. When they started to prep his arm for a shot of sedation he started to scream, he remembered that shot from his cath. It took everything I had to not cry and stay brave for him. A few seconds after the shot it went from screaming to silence and then the hustle of the nurses and doctors to take him back. Once he fell asleep that is when my emotions went. When he was a baby he didn't notice when I cried or when I was scared, but now that he is older he gets it. I have to put of a brave face a lot more often so he can also be brave and not scared. I wish he didn't have to go through this, but he is a fighter and he is strong. I am lucky to have his strength for my example. He has taught me a lot about endurance, even when I don't want to. Our first update most likely wont come until 2 hours after going back so we wont get that until around 11. It will be roughly 8 hours so Ryder is going to bring his Uno and Apples to Apples to the hospital and play with us while we wait. I will try to update when the update us.

Ryder and Mason after the Bruins game

Stickers

2 comments:

Cheri J. Crane said...: Thanks for keeping us updated. I wish I was closer and could give you a big hug in person. I am wearing my "Super-Mason" shirt today and our prayers will be with you continuously. Your names have been placed in several temples, including Logan, Brigham, Idaho Falls, and Rexburg. Love you all so much!; January 21, 2014 at 10:15 AM
Mary said...: Love to read your updates. We are praying for him and you, Mollie!!! Best of luck!!!!!!!!!!!!!!!!!; January 21, 2014 at 2:37 PM

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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.