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.

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