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Seize the Day

28 Jul

On June 25th, the children were nestled all snug on their pallets in the basement. Our temporary daughter for two weeks (love you, Rhys!), and the two permanent ones, had just started to dozIMG_9441e. It had been a long day (bean played a double header). It was a late bed time. The hubby and I had just dozed off too, when a scream from Teen Queen jerked us both awake. “Mom!!! Something’s wrong with Sella!”

When I say we may not have touched a stair when we flew down there, I’m not exaggerating. I didn’t know it was possible to move that fast at my age.

Teen Queen flew UP almost as fast, with temporary daughter right on her heels. She was crying hysterically, but I barely noticed. Focused entirely on bean, who was, at that moment, holding her arm in the air and saying over and over, “Is it my HAND?” I thought, “WTF is she talking about?” Hubby says, “She said she had the hiccups.” Then, she yells that her belly hurts and runs to the bathroom.

So picture all of this happening when you’ve just been woken by a scream. Yea. Chaos.

The next few minutes were us trying to calm down the big girls, trying to calm down bean who was freaked and shaking, trying to figure out exactly what in the ever-loving hell had just happened.

I said, “Just come sleep with us” to bean because TQ and TD were all — no way are we going to be able to sleep if she’s down here. They even moved to the bedroom, trying to erase the memory.

But we, in our infinite wisdom and utter exhaustion, just wanted to go back to bed.

The next morning, the big girls were still freaked. “Mom. Why didn’t you call the ambulance?” asks TQ almost the moment she’s up. And that’s when I started digging in. Questioning them both, in detail, separately. Then together. And the picture starts to come into focus finally at around 11am the next morning. And it was this:

She was making a weird sound that woke up the big girls. They thought it was the dog tapping on the floor. Then they realize it’s bean. TQ grabs her head and turns her over. Sees she is shaking violently and flips on the light to see her eyes rolled back in her head. Screams for us. Said she was choking and she thought she couldn’t breathe.

So I freak. I tell the hubby, “She had a seizure.” He’s all, “Nah. I don’t think that’s it.” So I ignore him and go call the pediatrician’s answering service. I go from the triage nurse’s voice changing completely once she hears what’s happened, to the on-call doctor saying she’s calling Children’s Hospital and will call me back immediately, to another call with her, to being told this is an emergency, to you may not be able to go on your planned trip to Yellowstone — we’ll let you know. My heart skipped 100 beats. We should’ve called 9-1-1. I felt like the worst mother ever known.

The next couple of days were multiple calls with bean’s regular pediatrician (love Dr. B) — who called THREE times to make sure we were okay. Who said, “The part that really sucks is she may never have another one, but you just never know.” And, “I’d keep a hand on her at all times when you’re near the thermals in Yellowstone.” And he may be the most mellow doctor I’ve ever met.

So this was serious. Serious enough that they prescribed a nasal emergency seizure-stopping med and told us we had to rent a satellite phone to go on the trip. Serious enough that we are to call 9-1-1 if she has another one. Serious enough that we were given an emergency appointment four short weeks later with the in-extremely-high-demand neurologist at Children’s.

I had to drive to the Anschutz campus of Children’s in south Denver just to get the Rx filled since no one else in maybe the entire Front Range will fill the prescription. And we had to rent a phone from a guy in California, who overnighted it to us — no problem. And off we went.

The horseback ride was my scariest moment of the whole trip. But once I heard the music of her incessant chatter with the head wrangler, my racing heart calmed and we settled into the pace of the trail

We made it home without incident. She may have even spent one night back in her own bed (after sleeping with me and sending the hubby to the couch for days and days).

The in-laws arrived just a few days later, so we were on an air mattress right outside of her bedroom for that whole week. Then the hubby and in-laws left on the same day, and we settled into a girls only week and it was almost like it had never happened.

The hubby came home for two short days. Weary and half-broken with a hurt back that landed us in Urgent Care on Sunday. And then he left. And then it was THE BIG DAY.

Teen Queen reluctantly came to support me. And bravely recounted the story over and over for the nurse, the neurologist. And the neuro exam with the gazillion questions, reflex tests, eye tracking. It was one of the longest days I’ve had in a long, long time.

We left at the end of the day with an EEG on the books and training for intranasal midazolam mastered.

There were theories floated and an indication of what this could be. How her history of migraines played into it all. How her restless sleeping ways that have us all playing roshambo to see who has to share a bed with her was something. How her late night sleep walk-and-talks were possibly a puzzle piece. The EEG was going to be the big reveal.

Said EEG was a 90-minute test that she had to be severely sleep-deprived for to get optimal results. And you can imagine how well that went over with newly arrived home from 2nd work trip broken boy/hubby. We quickly strategized. He had to work late (end of quarter) and TQ volunteered to stay up with him. So they took the up until midnight shift and I went to bed at 9:30 with an alarm set to wake up sleepy bean at 4am.

That was when she finally agreed to a post on social media. Up until that point she had said, “I really don’t want you talking about it. Please.” So I agreed. And only mentioned it to a very small few who happened to call when she wasn’t around. (Which is basically never since it’s summer and we are all up each others’ asses 24/7. Yay. Working from home.)
Bean was so nervous before the EEG that she was shaking. It went well though. They strobe-lighted her then hyperventilated her and then let her sleep at long last. It was like a mini-torture session starring my baby girl. And I somehow didn’t cry.

So then we waited. Until today. When the fabulous Dr. Yang called just as the hubby and I were ALONE in the car by some miracle. Her suspicions were confirmed by “some abnormalities” in my baby’s brain. Diagnosis (which I know you’ve all been waiting for): Benign Rolandic Epilepsy.

In spite of the fact that any time a pediatric neurologist calls you to tell you that your child has an official diagnosis based on abnormalities in the brain is cause for feeling like you may vomit, this isn’t all bad news.

She WILL grow out of it. Or at least is likely to. She may not ever have another one. And she doesn’t have to start meds yet.

The other part is they DO want to start her on migraine meds. So that is happening. And I asked for a MRI — which they willingly agreed to and, in fact, supported. So another test for bean. (And she ain’t happy.)

Otherwise, we are going to have to train the school on how to administer the seizure stopping drug (and any other camp or place she will spend any length of time). And she will not be able to swim or take a bath without eyes-on-her-at-all-times supervision.

It’s one of those mildly life-altering things that comes along and smacks you right in the face. Just when you thought it was summer and you could kick back a little.

Footnote: Hubby still isn’t better. But at least he’s home for a little while and we can pretend to be normal.

PS: HUGE thank you to Sean and Tina for jumping to my aid and answering my million+ questions when I felt like I was teetering on the edge of the abyss. Your insights calmed me more than you could know.

TODAY’S THEME SONG: I hear the drums echoing tonight. But she hears only whispers of some quiet conversation. Africa. Toto.

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