Our Lil' Hero: Post Op Day 11

Sunday, February 2, 2014

Post Op Day 11

Yesterday was kind of crazy so sleep overtook a blog post. Mason had a good yesterday and even got a little bit silly. He threw up after his morning meds and then again after his afternoon meds so they started him on an antacid to see if that would help. Right before lunch his nurse came in and told us that they needed to put Mason in a different room. He was in a private room and they needed the room he was in for a baby coming from the ICU on contact precautions so Mason had to move to a shared room. He cried that he didn't want to switch rooms, change is really hard for him here. The room we got moved into has another 3 year old little boy in it. It is a hard adjustment to have other people in the room with us and it made the space we have a lot smaller. He was up pretty late last night because they were awake so he just laid awake for a few hours listening to him so by the time he fell asleep I was beat and followed him into sleep. Single rooms are much better but we were pretty lucky to have a single room as long as we did without getting moved. He also got some great visitors our cousins Sonny and Jess came and it was so nice to have them here and that they brought some prizes with them, he was getting tired but I know that he fully enjoyed having Sonny to talk to and be around. His medication weans are still going good and if he stays on track with the weaning off the Ativan then fingers crossed there is a possibility he could get discharged on TUESDAY!!!! He can do the Methadone wean after discharge but has to be off the Ativan. They originally said that they would like us to stay in Boston for 2-3 MONTHS after he is discharged and then have a heart cath before we come home but they are very pleased with him and feel comfortable with us coming home 3ish weeks after discharge then he will have to come back in April or May for a heart cath to take care of more collaterals and for some ballooning of the pulmonary artery because there has been some narrowing in the area that Dr. Emani reconstructed in surgery. Zac and Ryder are hopefully coming back this week and then my mom and Ryder will fly back after a few days. I can't wait to see my boys! I will be sad to see my mom go too though, she has been so great to sit in Mason's room all day everyday with me so I have some company and am not alone. Please keep Mason in your prayers that he can keep tolerating the changes being made with his meds so we can be one step closer to going home. <3

He loved getting a package with a heart hug and a bunch of other fun stuff in it from our dear heart friends in Utah.

Painting his Spiderman picture from his package.

Being silly on his walk

A heart to heart between Sonny and Mason

Cuddled with his heart hug for bedtime

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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.