Tuesday, August 21, 2018

The Worst Day

I would love to tell you that I remained calm. I wish I could report that I knew exactly what to do. Instead, I found myself standing in the tall grass along highway 494 near Eagan, Minnesota, wailing, "Oh, my baby. My baby."

This was on Sunday. We'd spent the weekend with friends in Cologne. The day before had been full of fun activities. Our friends have a boat and we took the kids tubing on Lake Zumbra. It was my daughter's first time tubing. Our friends have three boys and she watched them do it first. The boys flew behind the boat, laughing and bouncing along on the waves that formed as Dennis guided the boat in circles, steering clear of nearby fishermen and a pair of loons. Soon, it was A's turn and she replaced one of the three boys on the tube (all clad in life vests). I sat in the back of the boat and took video clips of the kids careening across the water, having the time of their lives.

After the tubing adventure, we found a great bistro for lunch and enjoyed lunch on the patio, under wide maroon umbrellas. The kids sat on one end and the grown-ups sat on the other, adult beverages in hand. I fussed at my daughter because she was blowing through her data allotment by showing the boys goofy videos on her phone.

Later, we stopped at our friends' house to drop off the boat and then headed to Minnesota's largest candy store. I hardly have words to describe this place to you. It's massive (housed in a huge yellow barn) and full of every kind of treat you can imagine. I even found some amazing vegan cookies. We spent about $50 and our friends walked out at least $75 poorer.

Back at the house, we ate burgers hot off the grill along with corn on the cob and roasted zucchini, fresh from Sherri's dad's garden. Soon, we headed to the backyard, where Dennis had started a fire in the fire pit. The kids set up a corn hole set and played until it got too dark to see the boards. Finally, we watched a few episodes of Impractical Jokers before heading to bed.

The next morning, we had a quick breakfast before loading up the car and heading out at 9:30. Our friends needed to get to church and we needed to get home in time for P to get to work at 4:00. The eight of us exchanged hugs and then we started our journey home.

The kid wanted to get some rest (9:30 is early for her) so she quickly settled in and propped her pillow against the door. She was sitting behind me on the passenger side. Her dad was driving. About 20 minutes down the road, I checked on her and couldn't see the shoulder strap of her seat belt. I woke her up and made her show it to me. She lifted her red zip-up hoodie to show me the strap, and then dozed back off.

About 15-20 minutes later, I heard a weird noise from the back seat. I don't know how to describe it. If you keep your upper and lower jaw tightly clenched together and attempt to whisper, "Click click click" through your teeth . . . that's probably about as close as I can get. I think my initial thought was that my daughter was having a bad dream. Right then, my husband looked over his right shoulder and said, "She's having a seizure!"

The next few seconds found us in a state of sheer panic and terror. We'd been in the left or middle lane and had to get over to the right. As he pulled over, I frantically disengaged my seat belt. As soon as the car came to a stop, I jumped out as fast as I could and opened the back door. There I found my daughter in a full-blown seizure and completely unresponsive. I don't remember taking her seat belt off, but I must have done so. "Call 911!" I shrieked. I think he was already trying to call. However, he was in such a panic that he didn't hit the green "send" button. He finally managed to connect to the 911 dispatcher. I heard him say that his daughter was having a seizure and that we needed an ambulance. The next challenge was to describe where we were. I looked behind us and was able to identify the nearest exit. Later, we realized that we were directly in front of the TCO Performance Center, a massive building that serves as a training center for the Minnesota Vikings.

While we waited for the ambulance, I held my daughter as the seizure raged on. She was drooling and breathing very fast. Her arms were bent at the elbow, her hands tightly clenched near her collarbone. Her body convulsed and she continued to force air through clenched teeth. I remember thinking that I just needed to make sure she was breathing and that her heart was beating. I held my palm against her chest, which was clad in a red Rent tee shirt. Her heart was racing. I worried that she might overheat, so I embarked on a mission to get her red zippered hoodie off. I was able to pull it off her right arm but not her left. I decided to lay her down on the seat. She was still convulsing. I managed to pull off the sweatshirt and threw it on the floor. Was it safe to have her lying down? Should she be sitting up? I was in a state of sheer panic. I tried to sit her up but she was technically unconscious (I assume) and could not hold herself upright. I wondered if I was supposed to check her airway, but her teeth were still tightly clenched.

Later, I learned that I had really done all I could. The main goal is to keep the person safe, and I succeeded in that, at least. I didn't know what else I should be doing at that moment, though. I remember repeating, "I don't know what to do!" Why hadn't I Googled what to do in this situation? I just wanted it to stop with a desperation that I can't even articulate. I don't know how long it took the ambulance to arrive, flanked by three police cars, but I know it was amazingly fast. A seizure happens in a time warp of sorts. It may only last two to three minutes but it feels like a hundred years. By the time the ambulance arrived, my daughter was coming out of the seizure. I called her name and she opened her eyes. During the seizure I had started to worry about neurological damage. Now I had hope that my baby's brain was okay.

The officers blocked the right lane of traffic while the paramedics pulled my daughter out of the car and loaded her onto a stretcher. She opened her eyes and looked at me with confusion. "We're getting you some help," I told her, touching every part of her that I could reach. I remember hearing one of the paramedics (Marcia and a nice lady whose name I wish I could recall) thank the officers for blocking the lane because traffic had showed no signs of slowing, even for a little girl having a seizure on the highway. I remember the paramedics running some basic tests and at one point asked my daughter to stick out her tongue. She could not do it, which scared me.

I asked if I could ride in the ambulance. They told me that I could ride up front with Marcia. One of the officers led me to the front of the ambulance and guided me into the front passenger seat. Meanwhile, my daughter was loaded into the back of the ambulance. She was in full meltdown mode at this point. She is not a fan of medical procedures on her best day, and this was not her best day. There was talk of an IV, and she was flipping out. Later I learned that this is called the postictal phase, a period of confusion and disorientation after a seizure.

The paramedics changed their mind and decided that I should ride in back. So, for the first time in my life, I found myself in the back of an ambulance. My daughter was wailing, "No! No! No!" but didn't seem to know what she was protesting. She just kept clutching at the blanket, the seat belt, the blood pressure cuff, and wires that were all around. They brought me to the back so that I could calm her down, but I wasn't having much luck. I answered lots of questions from the paramedic who sat across from me. 13. No allergies. No, never had a seizure before. No medications. They didn't end up starting an IV but did run a quick blood sugar test by pricking her finger - her levels were fine.

Eventually, A started to calm down. I reminded her how to engage her breath for some yoga breathing she'd learned recently. "In through your nose and out through your mouth," I said, and then repeated several times. Remarkably, my tactic seemed to have some effect. I also pointed out the back window and reminded her that her dad was right behind us. We were headed to the Children's Hospital in St. Paul. I held her hand for the rest of the ride. "She's my person," I tearfully told the paramedic whose name I can't remember.

Soon, we were stashed in room 6 in the emergency room. P parked the car and joined us a few minutes later. I had texted Dennis and Sherri and they joined us within the hour. Once she felt steady enough to walk, I accompanied my daughter to the bathroom across the hall. I looked at myself in the mirror. My mascara was smeared in a way that was almost garish. I cleaned myself up as best as I could. My daughter's dried drool was all over the front of my tee shirt from when I clutched her to my chest in desperation during the seizure.

A doctor came in to see us pretty quickly. She asked my daughter if anyone had hurt her. A shot me a look of utter confusion. "It's okay, sweetie, she has to ask you that." We briefly recapped the previous day's events. Tubing, candy, corn hole. Nothing that would cause a seizure. No bonked heads or strobe lights or anything that would seem to point to a cause. The doctor recommended a CT Scan, which was done almost immediately after that. P and I stood in the darkened CT room as our daughter, our one and only child, was slid in and out of the massive doughnut, which was covered in Sesame Street stickers. I took a quick photo in case she might find it amusing later. I shuffled closer to my husband and put my head on his chest. I desperately wanted to have a good cry, like the ugly red-faced kind, but I felt like it wouldn't be helpful to our child.

The CT scans were normal, thank goodness. They also ran some blood work to test for things like salt levels. Everything came back normal. I knew my daughter was physically exhausted because she didn't even fight the technician who took her blood. Normally, even a flu shot is cause for crying and screaming and theatrics.

The ER doctor told us that the neurology team was requesting that we stay at the hospital until six hours had passed since the seizure. Apparently, if a second seizure will occur, there is a higher chance of it occurring in the first six hours. If we had lived in the area, they probably would have sent us home to wait, but we live four hours away.

By then, our friends had arrived and I had notified our family members and close friends. I also sent a message to my daughter's birthmom to ask about a family history of seizures (there isn't one). Plus, I knew she'd want to know. She was understandably as distraught as I was.

As relatives started to call and text, everyone wanted to know why why why. So far, there is no why. I hate to keep guessing at it because I truly don't know. My first theory was that the shoulder strap of her seat belt had pressed across her neck and maybe that caused the seizure. Her pediatrician later discounted that theory so I've refrained from guessing further. There's no point in it. I've decided to put my energy into an optimism that calls this a one-time occurrence. Many people do have one seizure and then never have another, so it is possible.

Back at the hospital, we took turns visiting the cafeteria. By now it was around 1:30 and we hadn't eaten. We ordered room service for the kid. She was hesitant to eat because at times she thought she might vomit. We finally convinced her to get some mild stuff like yogurt, rice, and pretzels. She didn't care for the yogurt but she did eat the rice. The hospital room was small but did have a flat screen TV and lots of free movies. We watched Jumanji. Four adults were pressed against the wall while the kid rested in the bed. We encouraged her to sleep, but she was scared because the seizure had started while she was sleeping. The nurse brought her a pillow and a warm blanket. She reassured my daughter that sleeping didn't cause the seizure and that it was good to sleep. As we were learning, a seizure is exhausting on the body.

Finally, at around 4 p.m., we were discharged. I was given a prescription for Versed, which I filled at the hospital's pharmacy. It's a pre-filled syringe that can be used if a seizure lasts longer than three minutes. I couldn't help but wonder how I would ever manage to time a seizure while my heart was being ripped out of my chest. A was very worried about the long drive home. We could have stayed overnight (my boss is certainly very understanding in that regard so it wasn't that I was worried about work), but we knew we had to get home sometime. I sat in the back with my daughter while her dad drove. I held her and rubbed her back. I think the three of us felt exceptionally tender at that moment, just uncertain and little bit afraid of what the future might hold. Later, we switched and my husband sat in the back with her.

We were relieved when we arrived home without incident at about 8:30 p.m. We set up an air mattress in our bedroom because our daughter did not want to be alone. She asked me to order a baby monitor, which I did. Once that arrives, she'll move back into her own room and we'll use the monitor as long as needed. She is worried about having a seizure at night and not being heard. We are adjusting to a new normal, I suppose. She is also worried about having a seizure in the shower, so I now sit in the bathroom with her while she showers.

On Monday, we visited A's pediatrician. He ran some neurological tests, like having her walk on her toes and touching her finger to her nose with eyes closed. He has referred us to a pediatric neurologist for an EEG, which tests electrical activity in the brain. As I have now learned, a seizure is what happens when the electricity in your brain goes haywire. The soonest appointment we could get is on September 7th. In the meantime, we have been instructed to focus on safety. No swimming, climbing, or crossing streets alone.

After we got home from Minnesota, my husband said, "I think I'm scarred for life." See,what you have to know about my husband is that he is a former Marine. He's an easygoing, stoic, Midwestern boy. I sometimes joke that you could set him on fire and he'd say that he was fine. He doesn't share his feelings, and I've only seen him shed a tear twice in 26 years. However, I could tell that this day had wrecked him on the inside. We might yell at our daughter for leaving plates in her room or losing her school ID, but everyone who knows us will tell you that our lives revolve around her. The seizure, plus the trauma of having our child plucked off the side of a busy highway and whisked away in an ambulance, have shaken us to the core.

I still feel like crying but each day is getting a little easier. I feel like the seizure is a movie that will just replay in my brain for the rest of my life, but I'm grateful that my daughter is fine and received great care. We were glad that we happened to be so close to the Twin Cities and not in the middle of nowhere (we passed a lot of nowhere on the long drive home). I was also deeply grateful for the outpouring of support we received. I had lots of worried people on my hands, as you can imagine.  Many people were praying for my baby.  As a Unitarian Universalist, my faith leads me to thank the paramedics, doctors, technicians, and nurses (go, science!) for helping my kiddo. However, I also feel that any positive energy/love being sent in my daughter's direction is a good thing. Call it prayer, call it whatever you want. People care about my child and that's important. The method of expression is really secondary in my mind.

Up until Sunday, I felt like I'd been through a few scary moments in my life. Now I know that those moments were nothing compared to how I felt on Sunday. I'm still processing everything that happened, but what I do know is that I'm the luckiest mom in the world because I still have my ID-losing, plate hoarding, curly-haired baby girl.





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