Our Lil' Hero: Post Op Day 4

Saturday, January 25, 2014

Post Op Day 4

Mason is now 4 days post surgery. When doing his pictures today I was putting day 3 on all of them. Days sure do run together in here. Today started as a really good day. Numbers were great. The only thing that was off was his fluid balance. He was retaining more than he was peeing and when the did a bladder scan his bladder was still full after peeing so they had to put his catheter back in. He opened his eyes a lot to day and even mouthed words like hi, mommy, and ouch. The first person he opened his eyes for was Ryder. That made Ryder really happy and it made him not want to leave Mason's room. He is such a good and attentive big brother. As the night got closer numbers started to jump around again. We got a new nurse for the night and she isn't as proactive as the other nurses have been so that is being hard on me. He got a fever again, his left pressure is high, and he seems uncomfortable. She just moseys around like it isn't a problem. She also doesn't talk to him. I already can't wait until morning and hope that a different style nurse put us back. She is nice and I am sure a great nurse but she is different than the others have been with Mason. Problem is that she is back again tomorrow night and will most likely be his nurse again. They don't let you request nurses here or say you don't want one, it is kind of a hard thing to deal with. Phew, now that I got that off my chest I am thankful that she is here to take care of him even if I don't like her style.

Zac and Ryder are leaving tomorrow. I am super sad that they have to go home. It makes me cry to think about. It is going to be hard having our family so far apart and not knowing for how long. Hopefully they will come back soon and visit. My mom is staying here with me though, thank goodness!

So in a nutshell today was kind of a hang out day with as far as care wise he didn't take any steps forward but more importantly he didn't take any steps back. He is a fighter and I am glad he is mine.

So good to see his eyes!

Not ready to leave

Watching Disney together

There isn't a bond better than the one that brothers share

1 comment:

Czarina said...: I got really sad - and teary eyed - reading about your husband and son leaving today.

We will be in the same situation and I won't have any support until my husband comes back the following week.

This is hard...but one foot in front of the other.

I am glad you got to see Mason awake and Ryder was able to see him.

Prayers for strength for both of you, healing, pressures and numbers to stabilize, and for your nurse to pick up her pace and be more aggressive.; January 26, 2014 at 7:42 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.