Do you ever get the most obscure song stuck in your head and you’re not sure where it came from, why it’s there or when it will go away? Thanks to the podcast, Radiolab, I learned these songs are called earworms.
A couple of weeks ago, Lola had a two day video EEG (VEEG) at Riley Hospital for Children. And the days leading up to the VEEG, I had the song, “Mamma Said There’ll Be Days Like This”, stuck in my head and on repeat. It lingered all day, every day. As I prepared breakfast for the kids, as I got ready for work, when I was at work, when I was driving, when I came home…you get the point. It was strange and annoying. I was frustrated with my own brain — the earworm would not subside. But the weeks leading up to the VEEG came with a lot of emotional pressure. We were in the trenches of weighing out anti-epileptic drug options. Do we wean the Keppra? What happens if she starts to have more seizures? What if her erratic behavior is just her and we weaned the Keppra and now she’s having seizures? What if something happens while she sleeps? What drug would we replace the Keppra with? My mind was relentless. There were choices to be made. Choices that would affect Lola’s life. Choices I would wonder if I’d end up regretting.
Then that song would creep in and I’d think lets just take one day at a time — one decision at a time. I began to embrace that darn song. It sort of became my theme song when I felt like I was drowning. I’m sure The Shirelles weren’t thinking a neurotic mom would be using it to get her through the tough days, but hey — music is all about interpretation.
great OK during the VEEG. Lola has had quite a few VEEG’s and as she gets older, the more challenging they become. She was hooked up on a Monday morning and by Monday afternoon, she was tearing off the helmet, the electrodes and anything else she could get her hands on. And to be honest, I couldn’t blame her. It would be uncomfortable for any person let alone a mobile, sensory sensitive, 4-year-old. There were wires coming off of her head, more wires she was tripping over and she was to be on camera at all times so nurses came in, what felt like, every 8 seconds to tell us she was out of the camera’s view. It was bad enough she couldn’t leave the hospital room, but to keep her dormant in one spot was preposterous. I tried to make the best of the situation. Anything I could do to keep a smile on her face, but she was frustrated and rightfully so.
Then the EEG technician came in with threatening news — either they were going to unhook her because she wasn’t cooperating or they were going to restrain her arms.
I lost it.
I stood there with tears welling up in my eyes as anger spewed out of my mouth. I understood where they were coming from because she was tugging at the electrodes, but I was pissed at the whole situation. It was beautiful outside and my daughter was hooked up to this barbaric machine with people barking orders at her and there was not a damn thing I could do about it. I couldn’t make it better for her. I hated epilepsy. I hated that it took her away from enjoying the sunshine on her face. And when “Mamma Said” started to intervene, I all but cursed it out of my head because these were not the days I was prepared for. I asked the technician and doctor for a moment. I needed to think, to breathe. I couldn’t picture my daughter being restrained. How could I explain that to Lola? She wouldn’t understand. But she had already been hooked up for so many hours and we needed the information that only an EEG could reveal. I reluctantly agreed as tears streamed down my face. I’m so sorry Lola. I slathered on Peace and Calming essential oil, I took a deep breath and I mentally prepared myself for the horror I was about to witness. And then they brought in the No-No’s Arm Restraints and I started to laugh. That’s it? Why didn’t they tell me she wasn’t going to be tied down to the bed? These restraints didn’t look so bad. The nurse put them on her and ironically enough, Lola loved them! She looked like a little superhero to me!
By day two, Lola had
sort of settled down. Rob and I switched shifts (I was on day duty and he on night) and I was ready to entertain again. But after 30 of the 48 hours, we were told nothing had shown up on the VEEG. This was great news! The technician couldn’t elaborate much, but Lola didn’t have any seizures and we had a choice to make. We were told Lola could unhook her early or she could stay at Riley for another night of observation. We felt another night wouldn’t contribute much more information and so she was unhooked. And she was one happy girl!
On the drive home, I had the windows open so Lola could feel the air on her face. I didn’t put on music, I didn’t pop in a movie and I didn’t really talk much to her. I wanted her to have a moment of normalcy — a moment to breathe. I guess I needed that moment too because for the first time in days, I felt my chest relax as I took a deep breath. When we got home, Lola happily sprinted around the house. She went from room to room, playing and laughing. It was so sweet to see her elated with joy to be home. Even though she couldn’t say the words, I knew she was where she wanted to be and that was home.
About a week later Lola’s neurologist called with official results — Lola didn’t have any clinical or subclinical seizures during the EEG. In fact, Lola’s EEG looked better than it ever had in the years prior! She had increased electrical activity in the occipital lobe that could lead to seizures, but no actual seizures were present. We are to continue with the Keppra wean and she is to remain on Trileptal. If we notice any strange movements, we are to call the office. And while we are ecstatic with the news, we are also realistic. We know seizures can come at any minute without notice. We know Lola will most likely battle epilepsy for much of her life. We know we will be faced with tough choices again in the future. But in this very moment, all I can think is how happy I am to be having a day like this.