Wednesday, June 12, 2013

Surgery Update: Day 3

Today is our third day at Riley - our second day post-op, and today has gradually gotten better.

Before I continue, let me remind you that Graden has two brain issues: the first is the Chiari Malformation, which is why we are here, and the second is Heterotopia (gray matter), which is at the top of his brain. The Chiari (Key-Are-EE) is what causes Graden trouble with central apnea (causing him to stop breathing at night), breathing regularly, and swallowing (causing aspiration). The gray matter causes seizures and seizure activity. The surgery we had done Monday (a decompression of the Chiari) has nothing to do with the seizures.

It was by "luck" that Graden had episodes yesterday while we were here. 

I say luck, because although I was terrified, I know the doctors seeing this behavior will help us determine the next step of treatment for that brain concern.


Last night after I posted my blog update, we learned the 30-minute EEG showed nothing abnormal, which was good news at the time. We discussed the episodes further, and in much more detail, with two Neurologists this afternoon. The two doctors are team members with the doctor (pediatric neurologist) we were referred to from our Neurologist at home. We will hold our appointment with her in July, but, after yesterday and his history of seizures, they are moving forward with tests now.

After reviewing the results from his last two tests that were faxed over from Fort Wayne, they decided to proceed with their own prolonged EEG overnight. So, he got hooked up around 5 pm and will wear the wires for at least 24 hours... Maybe longer. A concern is that he may be having more than just the absence seizures... The good news is that this seems to be something we can treat with an additional medication. 

We are really impressed with these two new-to-us doctors. As with all our experiences with Riley, these doctors are friendly, but they are also so thorough and willing to answer our questions. They are also very proactive and supportive of us and Graden.

In other news, Graden took a few extra naps today where he really seemed to sleep soundly... Tissues drastically improved his spirits from when he woke up this morning. He wants to be home, but even more, he misses his brother. 

Late this afternoon, they also allowed him to be freed from many of the wires and monitors. While they're still watching him closely, he was able to walk down the hall for a quick game of foosball with Dad. G won, of course. :)

He has also decided to eat. Not much, but a few bites is better than the nothing he has had since Sunday... The meal of choice? Mac N Cheese -- of course!

Now, as we wind down for the night, he's enjoying some applesauce and another viewing of Hotel Transylvania -- both favorites of Grado's.

Thank you for the continued support. Phil and I talk about how many people have reached out to us... It's amazing. I truly believe Graden's story has reached so many people because of his wonderful, contagious spirit and humor. He has made tons of friends here and will continue to touch the hearts of many... I just know it.



And, for those of you going through similar journeys, please let us know... Waiting and learning is difficult, but I know that talking to others who have been down this road is helpful. We want to help the way others have helped us.

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