Lee had a set of seizures Sunday night at a family Christmas party. I found him on the floor of the garage he had been playing in, on his side as though he was merely asleep. I called out to him as I ran to his side, and he remained unresponsive. Family filled the room, and he appeared to "snap out of it," before rolling to his tummy. Shaking ensued. His muscles completely went limp leaving his legs and arms flat to the floor, with the exception of his hands which were curled upward toward his wrists, and his feet which were pointed inward.
I carried him inside the house and decided to take him to the ER. We were close to the hospital where his neurologist is licensed, and we had been expecting to have an EEG and MRI there within the next few weeks.
He felt as though he was going to vomit, and then went into a second seizure. Completely limp, no muscle tone, with hands curled again. I asked for someone to call 911. Hugo took him to the house, and laid him on a bed. He was verbally responsive, but with eyelids closed, I could see his eyes moving from right to left, and back again, again and again. His limbs were limp, his feet turned to the side so far, that under normal circumstances, it would have hurt the muscles in his legs.
He was taken to Miller Children's Hospital in Long Beach. His vitals were strong enough that they released him with orders to follow up with his neurologist.
The reason why I opted to take him to the ER was twofold. First, this seizure was amongst his most strong ones, and the fact that he went into a second one was abnormal for him, and counsel from his neurologists has been to seek immediate attention when the seizures are stronger, or different. Secondly, I'd been advised by Lee's pediatrician to speed the approval process on the already-needed MRI and EEG by taking him to the ER in the event of a seizure. Her thinking being that the hospital would order those tests in an emergency setting.
But more strongly than anything, was something else I'd been told by the first neurologist Lee saw back in July, 2010. He told me that evidence of a seizure having happened is still available and read on an EEG both during, and directly following a seizure. That the evidence fades each day following. Lee has never had an EEG during a seizure, so even though we know he has them, nothing has ever been read that has defined either the location, severity, or type of seizure activity. We're kind of in an archaic state of not really knowing what is going on in his brain. Far more questions than answers.
I've had to turn into a pushy, demanding mom, trying to get him in. The soonest he can have an EEG is Thursday morning. This has been after me going all honey badger on everybody, too.
The level of my frustration and disenchantment with the medical/insurance procedures in California is profound. Hugo said it best, when he said, "Sometimes it's hard to tell who has a bigger God complex, the doctors, or the insurance adjusters."
Could you please pray with us that Lee's EEG gives them something? Like, any clues as to what is going on with him?
He is going to have his EEG at Children's Hospital Los Angeles on Thursday morning, at 9:30. It has to be a sleep deprived EEG, which means we're partying hard with him very late Wednesday night, and then we have to get him up very early Thursday morning, without letting him fall asleep in the car on the way to the hospital. Tricky! But, we'll do it. They want him very tired for the EEG, and they want him to fall asleep for them during it. He did it back last spring...I know he can do it! (But, please pray all the same.)
There always seems to be something, huh? But, to our pleasure, these "somethings" bring us closer together, and more aware of our dependence on Someone higher than ourselves. We are small, we have no control over events like these taking place, and when they happen, we are both shaped, and at least partially defined by our response to it all.
I want to respond well. I haven't, really. I have had F-Bombs on the tip of my tongue since Sunday night, and I've yielded to my inner Honey Badger. But, then again, those may very well be parts of who I am that have never had a healthy outlet before. Like, I was uncomfortable with being the type of woman who pushes my agenda. With the fear of maybe hurting someone, or even worse, making them not like me. But, there are times, I'm learning, when it just doesn't matter. My child needs me to be his advocate, and I have to push my way in and through places people don't want me to go, in order to get him what he needs. And he needs answers. And help. And the givers of both seem to be reluctant.
So, I push, getting comfortable in my skin. I'd say new skin, but no...it's familiar skin. Just skin that's been kept covered. I need to show some skin every now and then.
Balance. I'm happy to find a healthy balance. With the occasional expletive flying off my tongue as I find my need to do some deep breathing. Thankfully, God is in this with me. He's big enough to see me and accept me for where I am, knowing where I'm coming from, and understanding where I want to go. I want to go the right way, and He sees that desire, not condemning me for the process a sinner like myself needs to take to finally "get" it. He is patient. I am not. But, I am learning.
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