Saturday, October 8, 2016

The conversations we keep.

This weekend, we had a really cool opportunity. 
Make a Wish had contacted us a couple of weeks ago, to ask if we could speak about our wish experience at a convention near LAX. We readily agreed and then they sent us the information about the convention - which turned out to be a Hot Wheels convention! What a perfect fit for the kid obsessed with all things cars related!

We spoke last night during their auction, and I briefly touched on Bodie's medical condition and what his wish trip meant to him and our family. And then we received Make a Wish collectors edition cars, and passes for the entire weekend event. 

We spent the better part of today at the event, wandering through the different rooms selling and trading cars. They even had a magic show and raffle for the kids, and Bodie won the big prize - a new bike! 
Both of the kids pretty much thought today was the! We really had such a lovely time. We love speaking at Make a Wish events, because it give us a chance to reminisce about our wish trip and how much fun we had. And it's such a wonderful organization!

This afternoon, we were moving from hotel room to hotel room, looking at all the Hot Wheels cars for sale (there were SO MANY!!!!). In one room, a father came in after us with his young children. He recognized us from speaking last night and came over to say hi. He asked Sierra what her favorite color car was - when she said pink, he pulled a pink car out of his backpack for her and gave it to her. She was over the moon and he was so kind about it. He then gave Bodie a few cars as well. 

He then busied his children and came back over to talk to me. What he said next stopped me in my tracks. He told me that he and his wife, 13 years ago, had lost a baby. That baby had an underdeveloped left ventricle and they had opted to terminate the pregnancy due to the high costs of medical care the child would require for her whole life.

He was so sad. His pain and regret were palpable. The unanswered question of what might have been had they continued the pregnancy. Might she have been a success story? Might she have been like Bodie, running around and active, living a full life?

I didn't know what to say.
My heart broke for him.
What do you say? 
What do you say to someone who chose to terminate for the same condition that you chose to give your son life in spite of? 

All I knew was that this poor, sweet man was already full of so much regret, I didn't want him to hold onto it any longer.

I told him it WAS expensive, that we are very lucky that Dusk has a job with amazing health benefits.
I told him medicine was different 13 years ago, that just because Bodie is doing so well, born 6 years ago, does not necessarily mean his daughter would have done as well.

But, even so.
She could have been.
She might have been.

She could have been an honor student or an athlete.
She might have been one of the teens I saw this past summer, speaking at Camp Taylor.

There were so many things she could have been.
And the sadness of that filled the air.

I can't get that sweet man out of my mind.
My heart is so heavy tonight, thinking of him.
I hope something I said gave him some peace.

As we ate dinner tonight, I couldn't stop hugging Bodie, thinking of what might not have been. This amazing, smart, talented and funny soul I get to witness on a daily basis. 
God's perfection shown through my son's imperfection.

And to think of the many parents who still choose to terminate for HLHS. 

If you're an expectant parent facing an HLHS diagnosis, please don't.
Please don't terminate.
Please give your child a chance.
I promise you, it is worth it.  
Today, I came face to face with the other side, with someone who made the other choice.
Please don't.

Thursday, October 6, 2016

Was surgery successful? The complicated answer.

In the aftermath of Bodie's surgery, I have been asked repeatedly whether or not the surgery was a success. The answer is that it's complicated.

Actually, it's not.

The answer is "NO" and "we don't know, but goodness, we hope so."

We sent Bodie into surgery for 2 reasons: 1) his atrial tachycardia and 2) the risk of future ventricular tachycardia.

Atrial Tachycardia
Bodie has battled atrial tachycardia (a fast heart rate coming from his atrium) for most of his life. We have tried multiple meds to manage it, but never got it completely managed. Off medication, his heartrate is over 200bpm (beats per minute). On medication, the heart rates are only in the 100-130bpm range. Rates in this range, while not good for long-term heart function, present no danger to Bodie. Most people with heartrates in this range would not even notice. However, for reasons we have never been able to explain, when Bodie has prolonged episodes of atrial tachycardia, his body does not like it. He gets temperamental (more than typical!), easily angers and is very hard to deal with generally. Because his tachycardia all originates from a condition that he inherited from Dusk, CPVT, and sympathecomies are well known for treating arythmias originating from CPVT, we did the surgery to hopefully reduce or eliminate his atrial tachycardia. Unfortunately, surgery did not help this problem

According to his holter monitor from last week, he is in atrial tachycardia approximately 40-50% of the time. This is close to what it was prior to surgery. The upside is that his holter monitor DID show a pattern of when his tachycardia starts, leading us to believe adding in a second dose late in the day of his beta blocker may improve this.

Ventricular Tachycardia
Ventricular tachycardia is VERY dangerous. It is what causes sudden death - and what prompted both of Dusk's cardiac events in the last 2 years. VT causes the ventricle to beat too fast, prohibiting it from getting blood to the body. Very, very scary stuff. Bodie has NEVER shown any ventricular tachycardia. However, the CPVT he inherited from Dusk DOES cause VT, and it presents in Dusk as VT. So the likelihood of Bodie's atrial tachycardia eventually turning into VT is very high. When that happens, he will need an ICD. ICD's are hard to place in kids (and in Bodie's case, will require a sternotomy (his chest to be opened again). They are constantly improving this technology and we have every reason to believe this will not always be the case.

That said, sympathectomy surgeries are WELL KNOWN to treat VT caused by CPVT, The studies are clear that it's a good option. This was the second reason we opted for the surgery - to buy an insurance policy so to speak. Was it successful? We don't know. If he NEVER has a VT event, yes, we will say it was successful. If it buys us 5 years from the first episode of VT (maybe he would have had it starting at 10 years old, and now it won't happen until he's 15), then that will buy us 5 more years for him to grow bigger, for them to develop better devices, smaller devices, easier ways of putting them in him. In that case, it will have been a success. At this point, we just don't know, but based on the data we DO have, the odds are good that surgery may have helped this problem.

Did you follow all of that? I guess it is complicated after all. In short, it did NOT solve his short term problem, but it may very well have solved the long term problem - which was the more important, more dangerous problem anyway.

The immediate complications he faced post-op (seizure, decreased heart function, fluid build up, etc.) have all resolved and he is back to his baseline from that perspective. Thank the Lord!!! 

Except for his eye, where the pupils are still noticeably different - but he LOVES this. I think his Electrophysiologist was pretty impressed when I mentioned Bodie's wonderful attitude about it. That's ok. We're used to being impressed by Bodie. 

Meanwhile, Bodie carries on like nothing happened. He's just a regular 1st grader, loving school, counting in Japanese, advancing in karate and learning to ride a skateboard (sometimes all on the same day)...
Who just happens to have a fresh scar on his back.
I guess to him, it isn't that complicated after all.
You take what God gave you and you roll with it.
Because life's too short to look at it any other way.
I think we could all learn something from this kid.