Thursday, February 14, 2013

I Cannot Keep Her Safe

It's quiet in the house -- for the first time since Saturday. Little Miss is back in school this morning, but while the separation went relatively well for her, I found it too difficult to let her go.

I'm afraid.

My mind flashes back to Friday. I met her after school -- the same as I always do. But instead of asking to play at the playground (which she always does), Little Miss began to cry softly. Something was not right.

My "spidey sense" had been tingling all day. But I let her go to school.

I buckled her into her car seat, combed back her hair, took her glasses off for her, and told her to just put her head back and rest. I hoped she would fall asleep in the car as we drove home. We had plenty of time for her to get in a nap.

She cried quietly for a while and then quieted. I glanced in the rear view mirror constantly -- looking for her -- checking her breath -- her movements.

We were almost home. I pushed the garage door opener and then I heard it -- that sickening gagging noise she makes when her back arches and her tongue goes too far back in her throat.

A seizure.

I'm not sure how I got the car parked or even how I got her out of the car seat. All I can remember is seeing her little face as she laid on the car's back seat. She was gasping for air -- her lips began to pick up the slightest twinge of blue -- her face was ashen.

I begged her to breathe between reassurances that she was safe and that mommy had her.

And then it was over. Her body relaxed. She coughed a few times as the air came back into her lungs. She drifted into a deep sleep.

I brought her inside. Settled her onto the sofa. Texted my husband. Took her temperature. Called our neurologist's nurse.

She rested.

But it wasn't over. As I watched over her, her body began to tense again. At first, things looked voluntary, but I could not get her to respond to me.

Another seizure.

I gave her the emergency medicine. Tried again to find my husband. Gave up and called my parents. We had to go to the ER.

They tested her. Took blood and urine samples. Checked her heart, her oxygen levels, her temperature -- and found nothing other than a fever. We went home six hours later with a prescription to increase the Lamictal... again. Call back if fever worsens or persists.

And that's it?

I hate this waiting game. My daughter has had six grand mal seizures in two months. We have raised her Lamictal dosage three times.

I want this fixed. 

Now.

I don't want our family to live in fear of a cold, of sending her to school when she's a little tired. I want to keep her home -- safe with me. I can look out for her. I can keep her safe from the electric shocks that run through her brain.

She disappears down the hallway with one of the teachers and I force myself to take a deep breath.

The truth is, I cannot put my beautiful girl in a bubble. I cannot keep her home -- away from the friends she so desperately needs to help her learn the ways of life.

I cannot keep her safe.

And I am very afraid.

10 comments:

  1. Beautiful friend...no words, just heartbreak. I want it fixed too - for you, for her...

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  2. My heart is bleeding for you, mama to mama. There is nothing scarier, and no moment in which we must be as brave as this. I want to kick and punch and beat that neurologist but I have a feeling everyone is doing what they can. Nevertheless...

    Massive prayers going out for the key to controlling these seizures. Hugs and tons of love to you both. xoxo

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  3. My heart hurts for her and you. I know this - that mama need to JUST FIX IT and make it better. I just want this better for you all too.

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  4. I can feel your pain and desperation in this post. Such a scary few months, and I can only hope things settle down quickly.

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  5. Oh, I know that feeling all too well. I am so sorry that things are so hard right now. I hope beyond hope that you can get her seizures under control.

    There is nothing more frustrating and painful than not being able to help your baby when they are struggling. The waiting and the fear always feels endless.

    I am thinking of you all and sending love! <3 Hang in there.

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  6. I am a long time reader but now a first time commenter because I just wanted to say how sorry I am that you guys are going through this. You are strong and resourceful and smart and Little Miss is a force of nature but still it must be so hard and scary. My family has yours in its prayers.

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  7. Thank you all for your support. Having all of you, standing here behind me gives me the strength to step forward and get this thing kicked. From the bottom of my heart -- thank you.

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  8. I am so sorry, Karla. I am aching for you...I can't imagine watching my boys have that many seizures. It has to be taxing in so many ways.

    But I do understand, wholeheartedly, the "FIX IT NOW". We're in med hell and I want it to stop. Our kids should NOT have to live this way.

    Thinking of you and LM and sending prayers.

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  9. Oh honey, I'm so sorry she's going through this! I hope you get to the bottom of things soon. Sending healing vibes to Little Miss and sending you some peace.

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  10. I want this fixed for you too. I can't stand to think of you all having to live out that fear time and time again. Hugs to you friend.

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