Our Lil' Hero: Today

Thursday, November 4, 2010

Today

Sorry I haven't updated for a few days, we went home Tuesday night to spend some time with R and let him know we still exist so we just got back this afternoon. M has still been doing good, he is having a harder time when he is awake because now that he is awake more and not sedated he is sick of the breathing tube down his throat and fights it so they have been doing some spontaneous trials on the ventilator and he has been doing great. On of the times today though he didn't do very good but he was MAD the whole time so they are thinking he will do better once he is extabated. Today I asked the nurse what exactly he has because we have been told so many names through all this and honestly my brain is still kinda foggy and I have a hard time processing some things but anyways what he has is Hypoplastic Left heart, unbalanced AV canal, Mild Co-arch, small mitrovalve, and two ASD's. Anyways we are still all holding up really well considering. Thanks for all the kind words and prayers that are still being said, it means so much to our family and we are defiantly feeling all the love that is being sent our way.

3 comments:

brenda said...: It's funny because everytime I run into someone that asks about you guys and they want to know what "he has". I just can't get it right! so from now on I will just tell them to check your blog! As always, thinking and praying for you guys! Thanks for keeping up the updates!; November 5, 2010 at 9:11 AM
Ryan and Tab said...: I kept asking my mom about this little guy and just found out about your blog. You are doing amazing and it sounds like he is too. What a little fighter!!; November 5, 2010 at 11:48 AM
Unknown said...: It's so great to get an update on little M. It is also so nice to hear how positive you are. Sending love and prayers your way!; November 5, 2010 at 12:23 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.