Our Lil' Hero: Post Op Day 8

Wednesday, January 29, 2014

Post Op Day 8

Today was post op day 8. I still can't believe my baby's heart is now whole, it is a big concept for me to grasp. I stare at his numbers all day in awe, modern medicine and the human body are pretty amazing. Today Mason had a great day medically. There was no changes made as far as putting him closer to discharge but I will take that over back steps any day. Today emotionally has been a different story, he was really sad and quiet today. He asked about Ryder and at one point told me he wanted to go home. We have been in Boston for 19 days and I think being homesick is kicking in. Every time a nurse walks in he cries, he doesn't have any pokies or treatments in his room so he isn't crying because of that I think he is crying because he is confused and they are strangers. His ICU nurse came in tonight to visit him and he actually talked to her which is more than he has done with the other nurses on this unit. He spent a good portion of the day in the play room. He can't stand by himself yet so he would try to walk and play but then be tired and so we brought toys and art to the table so he could sit and enjoy being out of his room. With him having a hard day has made it a hard day for me also. There is no doubt I get my strength from my kids. They make me want to be strong so when they are sad and confused and there is nothing I can do, it makes me feel sad and confused with them. So instead of laying next to him crying, which is what I feel like doing, I try to keep him mind busy and try to make him laugh. So far today there was maybe one or two times that he smiled a real smile so tomorrow my goal is to get more of the real smiles from him. Hopefully tomorrow things will start looking up for him personality wise. His cousins are coming to visit and I think that might be a good medicine for him to have some family and kids to entertain him.

Today was a I don't want to take a picture or smile kind of day

His art work from the play room

How he felt about toay, even after building this big tower

He is dressed like Hulk but not feeing quite Hulk like today

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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.