Our Lil' Hero: Prayers for Xander!

Saturday, March 26, 2011

Prayers for Xander!

Our heart buddy Xander needs all the prayers he can get right now! Xander is also Hypoplastic Left Heart and is a few months younger than Mason. He is still in that scary stage between the first two surgeries and he has come down with RSV. RSV is really bad in healthy babies and is very deadly for heart babies, especailly with ones with such a special heart like his. He is struggling but trying to fight so hard at Primarys right now and could use all the extra help he can get! We are rooting for you Xander!! We are sending our prayers and heart hugs!

2 comments:

Unknown said...: Love & prayers will be for Xander!; March 26, 2011 at 12:52 PM
triplej said...: Have you heard how is doing? Very, very scary!; March 29, 2011 at 2:45 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.