Our Lil' Hero: Post Op Day 9

Thursday, January 30, 2014

Post Op Day 9

Post op day 9 seemed like it was going to be a repeat of yesterday. Mason woke up crying and not wanting anyone to talk or look at him. After his morning meds he had to go to chest xray and he was sad the whole time. We came back to his room and my mom had gotten here along with his breakfast. He ate a little then was sad again and wanted to go to the play room. We went to the playroom and it didn't last very long. Then he had a positive moment. The clowns came to the floor, he visited with them and even got a cute clown nose! We then got to go down to the patient entertainment center and do a fun art project. A company came in and we got to color a valentine type picture that they are making into cards to sell in the gift shop here, then also with the pictures we drew they scanned them into a computer and printed them on a sugar cookie for us to keep. I was so happy to make one for Ryder, I miss him and Zac like crazy! We came back to Mason's room after that and he got his pacer wires out. It was naptime after that and he woke up like a bear. It is so heart wrenching not being able to make him happy. Then we got a little glisten of happiness. The sweetest aid came in and had a dance party with him. He got some glowsticks from the treasure box and has some bongos in his room so we turned off the lights and I played the bongos with the light sticks as Ryan(the aid) held him and danced. It was such a thing this mom needed to see today. He got sad after that again but went to bed happy. I told his nurse we were going to have a movie party and she said she would let him be as soon as he took his 8pm meds until midnight when his next meds are due. So he helped me pop popcorn, we poured M&M's in the popcorn, put his Monsters University pajamas on, poured some pop and turned on Monsters U. He was so happy to have a movie night with just me and him. I am glad he went to bed happy. Tomorrow in the morning he gets to go see some therapy dogs so hopefully that will start his day out on a positive note.

This is how the day started :(

Happy to show off his clown nose

On vacation with his new clown friends

Mason and his cookie

My cookie for Ryder, Mason's cookie, my mom's cookie

Glow stick bongo playing

So happy for a "normal like" movie night!

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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.