Sunday, December 02, 2012

Little Hearts and Little Hopes

Last week we headed down to Grand Rapids to see Joshua's cardiologist. We go every two years now for check-ups, and this was just routine.

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EKG looked good. All four BPs were normal and equal. But since we've been noticing that Joshua gets out of breath quickly, and since he does still have a "nonspecific systolic murmur", his doctor decided to go ahead and do the full work-up with an echocardiogram just to get a good idea of exactly what was going on with his heart.

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The process of getting an echo has come a long way since Joshua's first! He was in a comfy bed, with lots of pillows to prop him and a bed that moved up and down according to the needs of the tech. At his fingertips was a remote for the TV on the wall, with an enormous list of movies to choose from to watch during the procedure!

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Afterwards we waited for the doctor back in the exam room. After almost half an hour he came in, saying "Sometimes God works in mysterious ways!", and proceeded to tell us that he had just been speaking with a young man (19 years old) who had also lost his voice the same way Joshua had, but that he'd recently had a procedure done in Chicago that had restored his voice completely! Dr. Lacina was excited about the possibilities for Joshua!

We discussed how Joshua's results of the echo looked good. His murmur is not causing any problems or indicating a need for further treatment at this time. We'll keep watching it, but other than the murmur his heart looks healthy and his aortic repair site remains clear and unobstructed by scar tissue.

That's AWESOME news!!! But that also means that the breathlessness when he's active is caused not by his heart - but by his airway being obstructed by the sagging, atrophied muscle of the paralyzed vocal fold. We knew there was a possibility of obstruction eventually, but since he has not indicated any trouble with swallowing or drinking fluids, it hadn't crossed my mind that it was obstructing his breathing while active.

Up until this point the only procedure I'd heard of was one that pulled up the vocal fold and sort of pinned it back, out of the way, which resolves the obstruction, but does nothing to help the voice regain strength since sound is caused by the two halves of the fold coming tightly together and vibrating against one another, not by being apart. This was the first time we discussed anything that would restore his voice, and it was exciting!

From what little we know at this point, the vocal fold would receive a transplanted nerve, restoring tone and firmness so that the other half of the vocal fold can connect with it, however, actual muscle control would not be restored. As far as we know, there is no procedure that does restore muscle control. Dr. Lacina is speaking with colleagues and doing more research for us and I will speak to him again in two weeks to gather more information and hopefully get a referral to an ENT doctor or laryngeal specialist who will consult with us.

So what that means on a practical level is that Joshua seems to have a good chance of recovering his voice in the not so distant future, however it's not clear yet whether that will resolve his airway obstruction issue since the muscle will likely still be unable to retract. So that's the news right now!

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I'm excited and I'm nervous!!! I can't wait to see what this year brings and wonder what it would like to be able to hear Joshua speak from the backseat of the car, or yell from across the yard, or not worry when he's outside that he'll be hurt and unable to call effectively for help. When he was younger he used to carry a whistle so he could use it if necessary. I wonder what it would be like to have him be at least as loud as his sisters.

But on the other hand, the surgery to complete the laryngeal reinnervation of his vocal fold is not simple. It's kind of scary, like all surgeries requiring your child be put under general anesthesia. Or where incisions are made in the neck. Or when they're going to dissect a nerve.

So, there is a lot to think about and pray about and a little bit of hope sitting there waiting like a gift under the Christmas tree!


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