Thursday, September 13, 2012

Big News

There is a very big event coming up in Ethan's future. After 13 failed medications, and a failed ketogenic diet, his neurologist gave us 2 more options. First was to put him on Felbatol, a rather dangerous antiepileptic drug used in extreme cases where several other medications had failed. We really didn't want him on it, but eventually agreed to try it. The dose is slowly increased over several weeks, while having bi-weekly blood draws to check for liver function. With every dose Ethan would actually get worse. It became very clear that this drug was not working for him at all, and he was actually sustaining head injuries from the violent seizures that would strike out of nowhere. Upon speaking with his neurologist about it, she informed us that she wanted to go forward with option number 2, a corpus callosotomy.

A corpus callosotomy is a type of brain surgery where the surgeon will go in and separate the bundle of nerve fibers, called the corpus callosum, that connects the two sides of the brain together. Certain types of generalized seizures, atonic and tonic clonic most prevalently, can be significantly reduced by having this done. These are the two most common seizures Ethan has, and they're by far the most dangerous. This surgery can be done two different ways, either by cutting the front 2/3rds, or the entire thing. The surgeon doesn't even want to mess with doing the partial. He feels we would be going in a few months later to finish it anyway so we might as well do it all at one time. Ethan went through a whole neuropsychological exam a couple weeks ago, and he will repeat the test a couple weeks post op to see if any areas have been damaged or altered in any way.

So we head back up to Denver Children's on Tuesday, the 18th for pre op blood work, a full physical, and a CT scan. The next morning he has the surgery so we'll be staying up in a hotel so we don't have to drive up at 4 in the morning! We don't know how long he will stay there. The surgery itself is about 4-5 hours, and he will be staying in the ICU for the first night. From there we've been told anywhere from 4-5 days to several weeks can be expected for a hospital stay. So far Ethan has showed that he heals very quickly, and is a very strong boy, so we're hoping he won't be in the hospital longer than a week or so!

 So that's our next big step, and if successful this could give him a big portion of his life back. Without the constant bombard of seizures he would be able to learn and retain information, have more typical relationships, and perhaps even play on the school playground without his aid one step behind him! Only time will tell, but we're keeping our fingers crossed!


  1. <3 Thinking of you and saying prayers for a successful surgery and quick recovery!

  2. Oh boy! This is huge news! Ethan is such a sweet strong boy. I hope more than anything he will get a break from these terrible storms going on in his precious little head. I will be thinking of you all in the upcoming weeks. Bless his heart.

  3. Thinking of you all- wishing Ethan the best of luck and a quick recovery!!!

  4. My daughter was born without her corpus callosum. My prayers are with you and your family. Also, with sweet little Ethan.