Our Lil' Hero: Post Op Day 6

Monday, January 27, 2014

Post Op Day 6

Day 6 has been a busy day! Today Mason's breathing tube came out, his arterial line came out, and his chest tubes came out. Things got sped along by his fighter personality. He literally wanted and was trying his hardest to rip it all out so they trialed him and he did good so out it came. He is super weak and up until tonight didn't talk. Talking wears him right out. He will say a few things then he is beat. He also sat propped up in a chair for a bit today and also went on a little wagon ride. They are still trying to balance out his meds. He is now going to med withdrawls and that is hard to see him go through, especially when he can't even fight them and just lays in bed twitching. They started him on some meds to help with that and the 30 mins before he can have the meds to counteract the withdrawls he is miserable. He got to have more fluid today so that made his eyes look so much better. He has ordered food but has a bite then spits it out, it is a step though to get him back eating. He still has along ways to come but is making steps in the right direction. I can't wait for him to have his voice and strength back. I sure do love this little guy!

Right after the breathing tube came out

One of our very favorite nurses Ashley. She has been his nurse every day except for one since he has been here. She is the best.

3 comments:

Debbie said...: Wow! Big steps today. He looks so good. Keep up the good work Super Mason.; January 27, 2014 at 9:50 PM
Unknown said...: So glad and grateful Mason is on the mend. :) Thanks for Keeping us updated. The prayers will continue.; January 27, 2014 at 10:38 PM
Unknown said...: Big steps for sure! I hope that he counties to heal.; January 28, 2014 at 9:43 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.