Our Lil' Hero: Post Op Day 14...... Discharged!

Tuesday, February 4, 2014

Post Op Day 14...... Discharged!

Tonight I am blogging outside of the hospital! Today, 14 days after a life changing surgery Mason was discharged. It is such a great feeling. I had mentioned to the nurse if he was going to be able to go home today I would like to go by or around noon, and they made it happen! The morning was pretty busy with chest xray, labs, packing, paperwork, scheduling meds, and saying goodbyes. The goodbyes were bittersweet. Some of Mason's ICU nurses wanted to see him before we left so we walked to the ICU and they came out and told them goodbye. They gave him a lot of hugs, a prize, and still tried to talk him into going home with them. These girls were my lifeline and as much as they took care of Mason they were always making sure I was taking care of myself also. When there is one nurse per patient you get to know them pretty well and we were pretty lucky to not have a lot of different nurses so they got to know us and we got to know them, and it didn't take them to fall in love with Mason. We will miss them! Mason's nurse today was awesome and she kept trying to talk Mason into staying. She kept telling him that he was the best, and that he needed to stay to hang with her all day, he just smiled and said no. Then there was Ryan. Ryan is a clinical assistant on the step-down unit and she is like a ray of sun, for real. Her and Mason had an instant bond and he immediately warmed up to her and even would let her hold him and play which is huge because he would hardly let my mom hold him. She had dance parties with him, and he sang her songs. She made him feel important and she will never know how much her kind loving personality touched my heart! I always knew Mason would be happy when Ryan was around(plus she has a "special" heart also!). I almost cried when we said goodbye to her. We walked to where we are staying and ate lunch and rested. He is starting to get back to his busy self. Tonight he even said, "I can run and not me get tired anymore!". Granted I haven't let him run but the statement is huge. We still don't know when we will get to go to our real home yet. He has weekly appointments for 2 weeks and in 2 weeks his cardiologist said we can discuss when we can fly home, so right now we just enjoy life outside of the hospital in our temporary home. Tomorrow there is supposed to be a big storm so I am hoping for a low key day of movies and maybe making cookies with Mason to keep him entertained. Thanks for all the continued prayers, this trip has been a amazing experience with a lot of miracles.

Ready to take his car back and roll out of there!

Mason listening to Ryan's heart

Just leaving the hospital

This is the best picture I was able to get of him after getting out, he hid every time I would go to take a picture.

2 comments:

Unknown said...: So happy that Mason was released from the hospital today! :) What wonderful news!; February 4, 2014 at 10:09 PM
Petersen Palace said...: Hooray for temporary home! I can't believe how good he looks today compared to his dehydrated days. What a champ. I love good nurses. It's cold and snowy here in Utah so you aren't missing much...aside from your own bed. There's nothing quite like it. Have fun making cookies!; February 6, 2014 at 7:19 PM

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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.