Our Lil' Hero: Post Op Day 5

Sunday, January 26, 2014

Post Op Day 5

A lot of good progress has been made today. Mason was awake most the day, up until this evening he was pretty confused and seemed a little uncomfortable but tonight he started to be a little happier. What changed was he got to brush his teeth with a mouth sponge. He grabbed it right out of my hand and started scrubbing away, he loved it and I loved seeing him happier. He is still has a breathing tube so that is bothering him. He gets confused when he goes to talk and no sound comes out. He is still sedated but today he went from 2 sedation meds to only 1. He also got his ventilator(breathing tube) settings turned down. The biggest success today was that he got his Left Atrial line out. That was a line going straight into his heart that measured the pressure of the left ventricle. His pressures were really good today so as of right now there isn't a plan for a cath, YAY! Dr. Emani said it still isn't off the table but it isn't in the immediate plans as long as Mason continues to progress nicely. As I was writing all of this the team came to do rounds, they are going to do a trial in the early hours of the morning to see if Mason can breath on his own and have his blood gas levels stay good. If that can happen then it will most likely he could get his breathing tube out tomorrow, I can't wait to hear his sweet voice again. While they were rounding he decided that he was irritated. He didn't cry but he was grabbing everything he could to try to hurry and pull it out, so needless to say his arm restrains are now tighter so he can't reach anything and cause harm. I am so impressed at how great he is. Besides being irritated he waves at the nurses, after they do things for him(even if it something he doesn't like) he gives them a thumbs up. He is so dang strong and is being so so good for a 3 year old in the hospital. Another thing that was good today is that he pooped, poop is a big deal after surgery so really he is moving forward very nicely!

Zac and Ryder flew home today. It was very very sad to see them go and I already miss them like crazy. Their flights went good, their bags made it with them, and they made it to Logan safely.

I have the worst brain fog right now and am on auto pilot mode so if things don't make sense that is why. Prayers for a good night and a good day tomorrow.

Wide awake and the first attempt at smiling

(they have him "dried out" aka dehydrated that is why his eyes look like this

Chillin' watching TV

1 comment:

Trav and Britt said...: We are praying for u guys and especially little mason! I'm glad to see his updates and so glad he's making progress! u guys are amazing! I can't believe how much you've been thru, I hope he had a speedy recovery!; January 27, 2014 at 9:32 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.