March 12, 2010

Unexpected Hope

I'm curled up on a sofa in a hospital room. It's late and it feels oddly quiet for such a busy place. Ella lays in the hospital bed next to me. She's asleep though I can't imagine how she could be comfortable. Her head is covered in cords that run to a box next to her. Monitoring every little impulse coming from her brain. It seems that, despite our best efforts, we haven't been able to quiet those impulses.

Ella has epilepsy. Ella has seizures. We accept it.

This isn't something that we can conquer. This is something that we can manage. Or so I've been told. For the past year we have managed Ella's seizures. Ella's new neurologist was not pleased that she isn't completely seizure free. I guessed that she had about 10 a day. They are noticeable only if you are aware. A second or two and it's over. Her speech stops and eyes half close. It seems so minor until you imagine yourself doing that. Over and over again. Try learning to read. Or getting so close to understanding the math lesson and then...what did you say? Sorry, I blanked out for a second. Could you repeat that?

Maybe 3 times in 15 minutes. She's 'managing' them.

Until, this new neurologist gives us a glimmer of something better. So, we sat for 24 hours in a hospital room. I wondered many times if Ella really wasn't having many seizures. Next door a teenage girl wasn't allowed to be alone for fear she would fall to the floor without warning and injure herself. Our situation is so easy compared to that.

The next morning we read and do math. Anything that should trigger an 'episode' is encouraged. As Ella tries to sound out 'driver' from the book she's reading I see her eyes shudder and press the red alarm button. Alarms sound down the hall and two nurses run into the room. But, it's already over. I feel rather silly, hitting the emergency button when there isn't a real emergency. I feel like we've caused trouble and I've overestimated the number of seizures she's having. The nurses assure me that they want me to press the button so that the computer will mark the EEG. The video that has been recording since our arrival will be marked. I agree and find myself pressing that button 5 more times over the next few pages. I wonder how Ella can even follow the story with the activity in her brain being such a disruption.

Then the doctor arrives. He's seen seizures I didn't notice. All night while her brain is resting, electricity is bouncing around. It seems she's rarely without episodes. "And your last neurologist was okay with this?"

Maybe he was too busy when I told him at every appointment since her last EEG that she was still having seizures. Maybe I should have pressed him more when he said he was happy with her 'levels'. Maybe we should have researched other drugs more thoroughly.

Ella's started a new drug, something that's known specifically for her epileptic thumbprint.

We have high expectations for this new treatment, but for the next few weeks as drug levels build, we'll just manage. Now, I have hope that soon she will be able to read a book without a single interruption.


Anonymous said...

I will be praying for Ella.

tiptoeapple said...

Oh man! Will be praying that the new drugs are good for her. You are a great mom!

Rob and Candy said...

Praying that the new meds work wonders for your precious daughter.
xxoo, candy

ethiHOPEia said...

Thanking the Lord for the ability to figure this out with medical care. May you continue to find peace in Christ! Sounds hopeful with the meds!! :)

beBOLDjen said...

Oh man! This made me cry.

I pray for your mother's heart as you walk through this with Ella. And, for Ella too!; that she'll get the right care. I'm asking for God to do a major work in that precious brain of hers.

alisa said...

Thanks for sharing -- this is something I find myself watching for with Micah (based on his birth-mom's hx).