Shots and Things

Today I had to take Jaxson to the cardiologist for his Synagis shot. It help keeps him from getting pneumonia. He's been getting them once a month since November and will continue through to March.

Unfortunately he lost weight. He pretty much weighs the same as he did a month ago, after gaining 9 ounces 2 weeks ago.

We also scheduled his heart cath surgery. It will be done on February 6th. He has to stop eating 4 hours prior, then he will be sedated for 2-3 hours (!!!!!!) while they do the heart cath, followed by 6 hours recovery. It will be late after that, so they will probably keep him overnight. I will of course, never leave his side.

After all that, they will schedule his heart surgery. I am so scared. I'm trying to learn to be strong. I have to be strong for him.

Jaxson inspires me. He has already been through so much, yet nothing keeps him down. He is always so happy. I love that the most common question I get is "Is he always so happy?" yes, yes he is. And I love it.

Now it's time to curl up with my sleeping cutie, who is sleeping away the pain from his shot and a head cold.

It's A Start

I have decided to start this blog to help myself get through the days and hopefully help anyone going through the situation I am facing.



I have 3 wonderful, smart boys; Jayden (6), Cale (5) and Jaxson (9 months). Jaxson was born with a large ventricular septal defect (VSD), which is a large hole in his heart. It measures at .79, which is really large.

Jaxson has not had surgery to repair the hole yet because it has not really affected him, until the past couple months. He was put on Furosemide (lasix) at birth, to help keep the fluid levels down so his heart doesn't work harder than it already is. His only problems have been slightly rapid breathing and sweating when he gets worked up or falling asleep. He's always been very low on the height and weight charts, straddling the 3rd percentile line. The past couple months he's been flat lining on his weight, at times barely gaining a half pound in a month.

So on December 15th, his Dr. decided that Jaxson needed to undergo a sedated echo-cardiogram. He's a very active little guy, thus giving his Dr. a hard time getting a good look at what is going on in there. On this day, he also noticed a muscle forming under his pulmonary artery, which is causing a pinching affect on the artery.

Fast forward to January 11th. We go into Sunrise Hospital for his sedated echo. The hardest part was trying to keep him comfortable for the 4 hours that he couldn't eat. They measured out the amount of medicine to knock him out and gave it to me to give him. He did not sleep! So they did the echo while he was at least calm. There was so much to look at this time, it took about 30 minutes. In that 30 minutes, it was decided that the pulmonary artery is in fact being pinched by the newly formed muscle, the hole has not closed at all (we had thought it was closing some) and that the aortic valve is actually moving into the hole. His heart is trying to fix itself in a very weird, very bad way.



So it has been decided. In about 2 weeks, Jaxson has to go in for the heart catheter, where they will look at what is going on and what all needs to be fixed. Then they will schedule open heart surgery for my precious little man.

I am completely petrified. Thankfully someone who is going through this right now has come into my life and I am able to get advice from her. I am so thankful for that! I hope that, in creating this blog, I can provide help and comfort to anyone else that has to go through this very tough situation.