Good News

I forgot to update, but Jack had his cardiology follow-up a few weeks ago. The doctor listened to his heart and various pulse rates, and declared him healthy. Just to be certain, we went back later in the day for an echo. That came back clear and fine.

He's healthy as a clam and his heart is working properly, and there's absolutely nothing wrong with him. :) We are very happy and relieved.

The doctor also said Jack doesn't need to be seen for at least five years. Yay!

Central Cyanosis

So, it's been happening at least once a day. This weekend was the first time my friend got to actually see Jack's lip start to turn blue, turn purple, & go back to normal. It seems to happen the most when he's active; and I'm not talking super active. He was just bouncing around in his chair at breakfast Sunday morning when his lip started to change color. It was odd & a little weird. His hands get really cold too.

Like I've said, I don't know why this is happening again. I just keep track of it. :)

In the meantime, we're battling strep throat & a stomach flu.. fun times. Jack is the only one who's not sick, and I'm only mildly sick at that. I'm trying to quarantine us. Ha ha.

Here we go (again?)

I honestly don't know what to make of things.. Monday, Tuesday, & Wednesday of this week, Jack has had prolonged central cyanotic episodes. I even took him to the ER on Monday, just to get him checked out. We don't have a regular cardiologist out here yet, as I'm still waiting on medicaid. All his tests came back fine, but they did an EKG and x-rays.. I want an echo done, but obviously can't afford it right now.

I'm worried. I talked to my sister, whose daughter has a leaky valve (amongst other things), and she suggested that Jack might be a bit leaky too because her daughter gets the same way.

I've been recording the episodes in a notebook, and so far there's no rhyme or reason to it.

I just want him to be okay. I really don't want to go through all this again..

It's been a while...

It's been a few years since I've written in here, mainly because I have been enjoying life. Jack is doing fabulously. We have had no stress in that area of our lives.

After I finished this blog, I thought to myself, Well, thank goodness all that is over! But it's simply not true. It's not over; yes, it's over for our family, but many many others are dealing with their own CHD children & babies, & even adults. I've decided that if I'm going to become an advocate for anything, it should be for CHD Awareness.

We were lucky enough to have doctors who ACTED. Doctors who truly cared about Jack's welfare & wanted to see him healed as much as we did. Some families don't have that. And some families just want to know they're not alone in their battles. And we, the CHD community, want to see more tests performed at birth. We want MORE awareness for this disease! There are so so many heartbreaking stories out there of babies who have died, but wouldn't have died if they'd only been given this or that SIMPLE test at birth. We want more research done on CHDs. We want more options other than open heart surgery. Too many people don't know that their child could possibly have a congenital heart defect, and too many don't know where to turn when they find out about it.

I created this blog so that hopefully someone, somewhere, would find it & would find comfort in knowing that someone has gone through something similar. But I'm finding that's not enough. I want to spread CHD Awareness to every facet of my life. I want it to reach out and touch everyone I meet. I will be an advocate for families, for doctors, for researchers. I will be a shoulder, an ear. I want to be to the CHD community what so many families were to MY own family, during our difficult journey.

This is my promise. :)