Charlie's EEG

On Thursday night we kept Charlie awake 2 hours past his bedtime, and then on Friday morning, we woke up him up 2 hours earlier than he would normally wake up. At first he struggled to open his eyes, leaning his head against Daddy's shoulder for extra support. As soon as he settled into a functioning and somewhat playful awake mode, we started getting ready for the long day ahead of us.

I made a batch of chocolate chip pancakes for Eleanore to take with her to her friends house for breakfast. My friend Marisa had emailed me and asked if there was anything that they could do for us, and though I hadn't thought about up until she asked, it would be really helpful if she could watch over Eleanore so she didn't have to go to the hospital with us. It was either Christopher stay home with Elie while I took Charlie alone, or Eleanore come with us. All of the doctor visits were really starting to effect her, and as hard as I try to talk about little brother as being "just fine", with a smile on my face, Eleanore is a smart girl, and she sees right through it.

The other day I overheard her playing with her pony dolls in the living room. "Oh no, she had a seizure! We have to take her to the doctor!", Eleanore shouted, in her high pitched innocent little girl voice. It was at that moment that it all sank in. I can't keep things from her, no matter how hard I try. She has eyes and ears, and she'll pick up on things, in her own way, no matter what.

So I prepared bags for both of the kids, one for Elie to take to her friends house, full of sippys and snacks, and one for us to bring to the hospital with us for Charlie- I had no idea how long we'd be there, or what we'd need.

Eleanore was anxious to play with Gracie and Annelie, their house is like a great big adventurous playground for her. The girls keep her on her toes, and shes always got so much to talk about after shes had a visit with them. Dropping her off wasn't difficult, she had said goodbye to Mom and Dad mentally before we had even gotten there.

I had a heck of a time keeping Charlie awake on the drive to the hospital. I had turned around in my seat, tickling and bending his arms and legs, singing silly songs, talking in silly voices- yet somehow he managed to zonk out anyways. He couldn't have been asleep-asleep for more than 5 minutes though, so as soon as the car stopped I flung open his door and yelled "No sleeping tired baby!". I startled him awake with my loudness, and then rather than getting a blanket to wrap him up in the below freezing temperatures, I pulled him out in just his pajamas. Try sleeping through that, little guy.

For anybody reading this, who might be unfamiliar with whats been going on, you can click here, to read about our son's recent surge of yet to be explained seizures.


The hardest part of the EEG, was getting set up. We went into a hotel style hospital room, set up just for sleep studies. The blinds behind the tacky curtains were the thick blackout style. There was a large fan on the wall across from the bed, which looked almost exactly like a bed pulled directly from a comfort suites brochure. There was a single chair sitting next to the bed.

Christopher was holding Charlie when we walked into the room, and the nurse asked him to have a seat with the baby. I chimed in, announcing that I'd be taking the baby, we made the switch, and then I took my seat. Christopher didn't argue, I think he knew that I'd have to be the one rocking the baby to sleep when it came time, or I'd go crazy.

I was told to hold down Charlie's arms with my arms, and to hold down his legs with my legs. I held them firmly in place, so that he wouldn't be able to move, no matter how hard he tried. Christopher knelt on the floor in front of us, looking directly at Charlie, using his hands to hold his head in place. They told us we had to hold Charlie as still as possible, no matter how hard he cried. At first it was easy, Charlie was being a good sport, letting them scrub glue onto random parts of his head without questioning. But as soon as he realized that he couldn't move, the more he wanted to move. He tried, and we wouldn't let him. He screamed so hard he couldn't breathe. He screamed so hard I could feel him shaking. I could feel his body temperature rise, and I could see his skin change color. This entire time, all I could see was the back of his head. Christopher is the one that had to look directly into his eyes and watch him beg to be let go. As soon as I felt a tear start to well up in my right eye, I quickly choked it back, knowing that now wasn't the time. I replaced my tears with lyrics to Old MacDonald and the ABC song, hoping to slightly distract Charlie from the constant scrubbing and tugging that was going on around him. Mommy and Daddy holding him down, while 2 complete strangers poked at him. It seemed to go on forever.

Eventually, all of the wires were attached, his head was wrapped, and the nurses were leaving the room. They had pulled up a few more chairs, one for Christopher, and one for me to put my feet up onto. I had decided not to move into the bed, but to just rock Charlie to sleep right there in that same chair, diving directly into comforting him. I held him tight and I sang songs of love.


As the nurses left the room, they turned off the lights. And then, I was able to cry. Charlie couldn't see me, he was floating off to sleep in between the sounds of mine and Christopher's humming, and if I cried quietly enough, he'd never know. It only took about 5 minutes for me to get it together and go back to singing him to sleep, and soon Christopher and I were able to whisper freely to each other while the babe was drifting into dreams, his Lovey nuzzled against his face.

When the 30 minutes of readings were over, and the nurse made her return, Charlie was very unhappy. If I could translate his cries into words, I'm sure he would have been saying "turn the lights back off! Mommy, don't stop singing! Lovey, wheres my Lovey?! Everybody leave me alone!". They took the dressings off of his head, removed all of the wires, and then with a sponge and some baby shampoo, did their best to scrub off the glue.

We were all very relieved when it came time to check out. Being in the comfort of our own car, even though its much too small and barely holds us, on the way to pick up the missing piece of our family (Miss Eleanore of course), the baby headed back to sleep in the warmth of his car seat...

One step at a time.

-----
Edit: For those of you bashing me over at thebump.com (thank you, to the poster that sent me the link)- my child was in no pain, while I took the picture of him crying. I took the picture just as he was waking up, right after they had turned the lights on and lifted his head dressing. His eyes were still closed when I reached for the camera. He was crying because he had been woken up, not because he was having a "surgical procedure". I snapped one single shot with my lens, and then put my camera to the side. Feel how you'll feel, but please don't go behind my back to a message board, to call me a monster.