Finally, they take me seriously!

For the last year or so, Jack's lips have been turning blue when he's cold and/or cold & active. Not just around the lips, but his entire lips would turn blue or purple. I brought this up several times to his primary physician (& the cardiologist from 2012), and he mostly brushed it off. The last time I brought it up, he finally wrote a scrip for a finger pulse ox. Well, I decided to just get one online for $30. :)

We went on vacation to Florida, and that's where it was really visible. Jack would play in the pool, and his lips would turn purple. One time when I put the oximeter on his finger, it calibrated and was down to 88%. I freaked (in my extremely calm way), and ordered him to get in the hot tub until he warmed up. I contacted his primary with the information, then my phone died and I had to wait for a new one to come in. Long story short, we got an echocardiogram & EKG set up for right after Jack & his brother got home from vacation in California, in August.

The echo & EKG went well; everything was normal. The cardiologist (who I later found out is the head of cardiology at Dayton Children's) talked to us for a while about what COULD be wrong. I insisted a stress test be done, so we set that up.

THAT was interesting! Jack did really well, and ran for the full 10 minutes. One thing both the doctor & I noticed was that the more Jack exerted himself, the lower his blood pressure went. However, during recovery time, his blood pressure went up.

The cardiologist talked to me afterward; Jack has Autonomic Response Dysfunction. Basically, his brain's signals to his body are backward. Or weird. When Jack gets cold, his lips turn blue (most peoples lips don't turn blue when they're slightly chilly; I'm not talking FREEZING here). When Jack exercises, his BP goes down (the opposite of the majority of people!). Sometimes when it's warm, Jack will be cold. Sometimes when it's cold, Jack will be warm.

*shrug* It's something that's not terribly serious right now, but could become a problem as he gets older. So the cardiologist said he'll see us again in 2 years. :)

Just when you think it's over......lol

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. :)

Perfect

Jack saw Dr Wong today. He had an Echo and an EKG. Dr Wong said everything looks perfect--Jack's heart looks great, the patch looks great (and is doing its job), there's no more shunting...

He said we go back in 3 months and, after that, not for a year or two.

We are all SO relieved! He's a normal little boy now!

Oh, and if he gets any dental work, he'll only need antibiotics until July 17, 2008... not for the rest of his life, like we originally thought.


Thank you, thank you to: Dr Trento (surgeon), Dr Wong (cardiologist), Dr Ferry (cath lab surgeon + cardiologist), Dr Cheng (surgeon), Ann (surgical nurse practitioner), and the ICU team at Cedars Sinai. This would not have been possible without them and their expertise.


Yay!! :D

Jack's Surgery and Aftermath

I've been seriously putting this off, and I'm so sorry.

January 17: We took Jack in for his surgery at Cedars-Sinai Medical Center. From past experience (watching other people go through similar things), we expected the surgery to last at least five hours. It didn't. He was on and off bypass in an hour, and the surgery itself took about two hours. The thing that took the longest was getting him prepped, and taking him off the respirator.

Seeing him in the PICU was a bit of a shock. We were slightly prepared beforehand, but it's very different when it's your own baby. After washing my hands, I ran to his side and nearly cried. C nearly passed out. Jack was hooked up to various IVs, had an oxygen mask on (his breathing was torturous, at best), and had a chest tube in (you could see the blood/fluids being drained from his chest). *shudder* He's a strong little man, though.

He spent one night in the PICU (his nurse that first day totally reminded me of my sister B--same smile, same sweetness, same calming attitude... it was very nice), and two nights in the pediatrics floor. We were sent home Sunday afternoon.

The doctor had told us that he wanted Jack up and walking the day after surgery; we didn't believe it was possible. Sure enough, he walked around a little bit. Two days post-surgery, he was walking, running, trotting--basically, he ruled the halls of the pediatrics floor; he acted like he owned the place.

The incision itself is a work of beauty. It looks like Jack just got a giant cut on his chest... it doesn't look like he just had open heart surgery. He's healing very fast, and is doing so well. He's still on a Motrin regimen, simply because it's still very painful for him. He also had Tylenol with Codeine "as needed for pain", which we've had to use a few times.

What a trooper!

A couple pictures...
Two days post-surgery:


Almost one week post-surgery:
















A lot of thanks are in order for: Dr Trento and his team of surgeons and doctors (including Ann, the cardiac nurse practitioner), Dr Wong, Dr Ferry, the Doctors and Nurses on the Pediatrics floor, the Nurses in the PICU (including Dr Amer in the PICU). Also: my family (brothers, sisters, parents, aunts, uncles, cousins, nieces & nephews, inlaws, etc) and my small, but tight, groups of various friends. Also also: C's coworkers & bosses, the vendors C calls daily (for their continued thoughts and prayers), and C's customers. Also x3: B&E Sales for the teddy bear that Jack says is "MINE!!!" and won't let his brother near. :)

Everyone has been incredibly supportive during this time, and has shown so much love and kindness and understanding. We really are blessed to have such a large group of friends and family, who have been praying for us and thinking about us--well, mostly Jack--during this whole ordeal.

Long story short: THANK YOU EVERYONE! WE LOVE YOU TOO! :D