Our Lil' Hero: The best thing about a blog.....

Monday, January 16, 2012

The best thing about a blog.....

Is it can turn into a place to vent and release feelings! Mason has had a cough since December 1 and it hasn't gotten better at all. He also is starting to look a little puffy in his face and belly. Worried people should not be allowed to use Google because what happens when I look up those symptoms??? They are all signs on heart failure! I called his cardiologist and told him what had been going on and they got him fit into an appointment on the 27th for an Echo and a good check up. I have alot of hope that it isn't failure that it is just something else that is random and no big deal, but still makes me a little nervous. I keep reminding myself that faith and fear can't occupy the same space so I am trying to push the fear out so I can keep the faith in. Other than that he is doing pretty dang good for such a fragile little guy. We(and when I say we I am really meaning me) are ready for summer to come back especailly now that we are in full swing of RSV season and are now starting to be homebound to keep us all healty so we don't give anything to Mason. Well there you have it, my release for the day :) Thank you to all of you who still read the blog and keep us in your prayers! The power of prayer is so amazing, and you all have a special part in our little Miracle. ♥

3 comments:

brenda said...: I still read! HIS APPOINTMENT WILL BE GREAT! He is one strong little boy!; January 20, 2012 at 7:27 PM
One Happy Heart Family said...: I bet it's just a "seasonal" thing, I think he would have a ton more symptoms if it was heart failure. I know with Kylie she had tummy aches and then finally was lethargic, that's when I said enough and rushed her down to the ER, I still relive that day every time I worry about Kylie & her heart. Good Luck on the 27th. Can't wait to hear the "GREAT" news!!; January 21, 2012 at 6:11 PM
Bj said...: I Hope his appointment went well! Google is the best thing ever... but also the WORST. Stupid symptom checker things;) Hope you guys are doing well and we sure miss good old Yorkshire and everyone!; January 27, 2012 at 7:20 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.