Our Lil' Hero: May 2011

Tuesday, May 3, 2011

It's All Good!

Oh how I LOVE good news!!! Yesterday Mason had his chest xray to check for chylo. I had such a good feeling that things were going to be okay because I had been measuring his stomach and watching his breathing after they changed his formula and he kept doing good so I was really hoping that his xray proved to be good because he was acting so good. Well it didn't look better, but it didn't look like chylo either!!! YAY! So they are hoping that his body will just absorb the fluid that is in his chest cavity so they will just keep doing regualr xrays so watch it. On a different note, when Mason was diognosed at Primary Children's I am pretty sure I would have thought it was the end of the world, except for an amazing family who became such a support to us. Their little boy was in the room next to Mason with some complications waiting on the third surgery, the Fontan. I'm sure without them I would have gone of the crazy train, but they were such an example to us and watching the mom made me know that I want to be the kind of mom to Mason like she is to Carter. And the dad is always so positive, (plus he introduced us to the slushie machine in the PICU) so anyways they have been in the hospital for 10 weeks straight with a problem that wasn't really getting better, they were told that they would be able to go home today but last night that changed and Carter is having to have another open heart surgery after what was supposed to be the last one. This family is truly AMAZING!!! I feel like we have a friend for life with them and really they are one of my biggest role models. Please pray for their little guy and their family. They also have a baby so this whole time they have not been able to be all together as a family. It will be such a happy day when they are all home together. I am so grateful for their kindness and their support, I only hope someday I can be half the support for them that they have been for us. Thoughts and Prayers for their cute family is much appreciated! ♥

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.