Saturday, September 4, 2010

Guarded, Waiting and Accepting

You'd never know looking at pictures like this just exactly what is going on in this kid's head. His thoughts and actions that haven't taken place aren't apparent until he allows them to be shared with the rest of us. He's usually not really guarded though and it doesn't take much to get him to talk about what he likes or dislikes. It doesn't take much for him to take action either. He is an active boy and one of his favorite things to do is ride his bike or jump on the trampoline.

We've been guarded though. There's something going on in Austin's brain that even he isn't aware of. The very activities that he enjoys the most are off limits or closely watched. After his first seizure, we have watched and waited; not knowing if another one was just around the corner or if he was one of the lucky ones that would never have to go through it again. We had no clue earlier this week that we would soon find out.
After Austin's first seizure on August 11th, we were referred to a pediatric neurologist in the area. He was scheduled for an EEG and then an initial appointment to meet with the doctor a week and a half after the EEG was to be done. While the appointments weren't as soon as we would have liked, they were sooner than we thought they would be.
Friday was the day. The hard part was that it was a sleep-deprived EEG. We were instructed to keep him up until midnight the night before and wake him up again at 5am and keep him awake until his 9am appointment. Brian stayed up with him with me planning on waking him up early. Austin was excited to spend some boy time with Daddy, playing Legos video games late into the night and sleeping on the sofa couch with Daddy. Everything was going well...and at midnight, Daddy turned the TV off and they went to bed.
I had gone to bed at 11 (a little later than I planned, but what can you do?). All of a sudden, the lights came on and Brian was snapping at me. It took me a moment to realize that it wasn't 5am and that something was wrong. I ran to the loft and saw that Austin was having his second seizure. We were actually seeing what our friends witnessed 3 weeks earlier. Only this one turned worse as it just kept lasting longer and longer. When the shaking stopped we breathed a sigh of relief, then realized it wasn't really over. He had gone into a focal seizure and the time still ticked on. We called 911 since it had gone on so long and we were worried about his breathing. Ten minutes had come and gone when panic was beginning to set in and monitoring time became less of a priority, so we don't know exactly how long it went on. Right before the paramedics came in, he was finally released from it. It was like someone turned the switch off and he just went limp and rolled over onto his back.
He was going through a restless period when the paramedics walked up and while he was trying to respond to questions, he wasn't too coherent. He finally curled up in my lap and fell asleep (which is completely normal right after a seizure). We decided to take him to a different hospital than last time and are very glad we did. This hospital had a pediatric ER and was like night and day compared to the military ER we had gone to the first time. He had a CT scan which came back normal and blood work came back normal as well. The doctor on call contacted the neurologist that he had yet to see and we were instructed to continue with plans to do the EEG that day and follow up with him on the 14th like planned. With nothing else to be done, we went home; praying we would have answers soon.
Internet research has been done. We have found something (well, Brian's mom found it) that seems to describe everything that Austin experiences during his seizures. Obviously, we had already connected the fact that both times he had stayed up a lot later than normal. With the EEG done, we are just waiting for the day of his appointment to see what the doctor has to say. For now, we are just planning on keep him from staying up too late until we know more, along with all the other things we've already been doing.
With our hopes of Austin never experiencing another seizure dashed, we have to move on to accepting that this might be part of his life, at least during childhood.


Yvette said...

Wow Kerum sorry to hear that. You have me very curious though what kind of seizure you found out that was related to lack of sleep. Poor guy.

Lisa Smith said...

All I can say is we are thinking about you all. Please let Austin know that Skylee asks about him all the time and is thinking about him.
I have had a seizure myself when I was 18 or so and it was a one time thing. I will say in my experience it was mostly embarrassing. It didn't hurt but just made me feel a bit funny for a few days.
I hope he gets the clearance to do all his fave things very soon! I know how hard it can be to keep an active 5 yr old calm and quiet!