Our Lil' Hero: Update!

Sunday, November 21, 2010

Update!

Thanks for wonderful neighbors who let me use their computers while I don't have one!!! M is still doing really good! When he came home his diet was to eat 50ml every three hours so he'd eat about 10ml and the rest we'd have to put through his feeding tube. Well he was throwing up and pooping like crazy so at his appointment this past Thursday he hadn't gained as much as they wanted to so they changed his diet to 45ml ever 3 hours then in the night have him hooked up to the feeding pump and have it feed him continuous all night, and it has made such a difference he still spits up but it isn't throwing up like it was before. And yesterday he ate for the first time a full 45ml! He did it 3 times yesterday and so far 3 times today and we still have one feeding left so I'm hoping that one will go as good as the last ones have! Everything is still going as planned and he hasn't gotten sick so far! We still have to limit visitors so how we have decided to do that is just no kids over at all until at least after his second surgery and if your kids are sick if you'd wait to come until nobody is sick at your house! We have so much support from everyone and feel so lucky for all the friends and family in our life! We hope everyone has a safe and fun Thanksgiving (and Black Friday ;) ) I will be making my first turkey for our little family and my mom so I hope I don't burn the house down! We are getting a computer on Black Friday and then hopefully get the internet hooked back up that next week so I'll be able to load some cute pics of my little guy!

1 comment:

Heather K. said...: What!?!?! I can't believe he is eating! That is AWESOME! Hopefully you score an awesome laptop. I am heavily debating on whether to go out or not. Last year I didn't and I missed it. This year I might need to get my game face on! :); November 24, 2010 at 5:17 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.