Our Lil' Hero: HOME!!!

Monday, November 15, 2010

HOME!!!

We're home!!!! M got discharged Friday evening. Everything is
Going good, just trying to get adjusted to our new life! Is definitely
An adjustment! He isn't strong enough to eat on his own so he has
a feeding tube and pump. He has a home health nurse that will
Come in twice a week and a speech therapist that we will see also.
His nurse came today and he's up to 6lb 13oz! I'm trying
to post this from my cell phone So it's going to just be short and
sweet, hopefully we'll have a computer soon so I can do a better update.

3 comments:

Heather K. said...: SOO glad he is home now for you guys! What a strong little guy! :) And yay for that weight gain! That's a pound since he was born? That's pretty good! Maybe that medicine is helping him gain weight...

Hope all is going well! There was a program that Aly did that was recommended to us for physical and speech therapy. I'll find the info and send it to you in case you want to check it out. :); November 17, 2010 at 7:54 AM
Bj said...: Yay! What can we do for you? We don't have a 3 year old little boy for R to play with, but he can come play anytime:); November 17, 2010 at 9:55 AM
Katy said...: I'm so glad you are home and doing well! M is so cute!; November 19, 2010 at 1:27 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.