The Seizure Story--Part One

Mother's Day 2014. A Mother's Day that I will never forget and not for reasons one might expect. Not because of the adorable handmade cards and gifts (although I did get those) or a day of pampering (which I unfortunately did not get). It was the day my little boy had his first seizure. And it was a doozy.

It's Tuesday night as I start to write this, 9 days since Curtis had his seizure, and I feel like I'm just beginning to come up for air. Last week was a blur. Too many sleepless nights. Days filled with anxiety, constantly watching my boy for signs that something was "off". We're falling back into a routine here, although it's a much different morning-to-night than what we had two weeks ago. All of his usual activities have been temporarily stopped, but we hope to get back to swim lessons and our regular therapy schedule next week. I also have a new sleeping partner. He is 5 years old and as I sit in bed with my laptop typing this, he is snuggled up next to me. I feel safer this way. He is happy to jump into my bed every night and right now I am all about doing just about anything this kid wants.    

Where do I start this story? It's still a mishmash of pictures and events in my head. Bits and pieces of it run through my mind throughout the day.   

For me, the story starts on May 9th, the Friday before Mother's Day. At 8:30am Curtis' preschool class had "Muffins with Mom". If you follow the All About Lefty Facebook page or Instagram then you saw the photo I posted from that special little get-together. He was so excited about this event and had been talking it up all week. As a mom, I live for these moments.

Right after the preschool party, at 9:00am, I had the triennial reevaluation and kindergarten transition meeting. This was the big meeting that I had just written this post about. I stressed pretty hard about this one because that's what I do. Hope for the best, but plan for the worst. Moving on to kindergarten is a pretty big deal--new school, new teacher, new therapists, new everything. Curtis (and I, for that matter) has only known his current school for the past three years. Lots of changes on the horizon
I can report that the meeting went amazing well. Much better than I could have ever hoped, actually. I left feeling so hopeful for the coming school year for Curtis. This day was perfect. 

When Curtis was done with school at 2:00, his older brother and sister and I picked him up and we headed straight out for Palm Desert. This was a last-minute trip that I planned (I couldn't pass up a deal I got on the resort) and the kids were so excited to "get away" for the weekend because it's something we literally never do. It was just the kids and I on the trip--Daddy was staying home. I wanted to make it a great weekend for the four of us--lots of pool time and lounging around.

Saturday, May 10: What a day! We woke up, had breakfast, went to the pool. We weren't there for very long before bumping into some good friends of ours from home. My friend, her mom, and her two girls were there for the weekend (hubby and son were home). Small world, folks, no joke. All the kids spent some time together during the day at the pool and then we ended up meeting with them again later on that night for dinner and some late-night pool time. We all had a blast! The weekend was turning out to be great--better than I could have imagined. The kids were being well-behaved, everyone was having fun...what more could anyone ask for? 

Curtis enjoying a peach smoothie by the pool

Sunday, May 11: We woke up a little late and lounged in our room for a while since we had been up late with our friends the night before. We left the room at about 10:30am. Lo and behold, the pool wasn't open yet! I guess there was a sandstorm the night before and they were still in the process of trying to clean all the sand off the bottom of the pools. Luckily, because it was Mother's Day, the hotel had all sorts of activities planned. There was both a jumpy house and a small petting zoo set up outside the pool area to keep the kids occupied. 

Within a half hour, the pool area was open. Unfortunately for Curtis...the hot tubs were not open. My little guy, no matter the weather, loves himself a "hot pool". Because it was his only choice, into the big pool he went with the rest of us. Curtis lingered near the steps as usual and swam back and forth to me. At some point during the cleaning process they must have added a ton of water to the pool because the water level was significantly higher today than on Saturday. Curtis could barely pop his head out when on his tippy-toes in the shallow end. So I spent 90% of the time (if not more) carrying him around in the pool on Sunday. It was also a lot more crowded in the pool. 

These factors--higher water level in big pool, crowd of people in big pool, "hot pools" not open--made Curtis kinda grumpy. He just wanted to hang out and sit poolside on the chair with me, which I was totally OK with! I could tell he was getting a little tired, too.

Hanging with Mom

We had a great spot right next to the pool, under an umbrella. We ordered some smoothies and ate some other snacks. We were set. Things were good.

12:45pm: Big kids come back to the chairs to drink their smoothies. Everyone is happy. I take a group photo--quite possibly the best selfie group shot we've ever taken...

I honestly could not have been happier at this moment. 

In about 20 minutes, he will start to have a seizure.

A few minutes after that selfie, we took a few more photos. Poolside they had this open-air photo booth set up so you could "take photos with mom," and sis was obsessed with it. She insisted that we all go do this like NOW. So we did. And it was actually kind of fun. We all picked out our props and laughed while taking the photos (yes, even Curtis, although you can barely see his face). 

These photos were taken approximately 5-10 minutes prior to the onset of his seizure. 

So what happened after these photos? I go over the play-by-play every day...

We walked back to our chairs by the pool. I was holding Curtis. The ground was pretty hot by the pool and I was carrying him to protect his little feet. Suddenly, I could feel his legs tense up around my hip like he was holding in his pee. I asked him, "Do you need to go potty?" and he didn't respond. I asked again. No response. And then he peed on me. I quickly released him from my hip and stood him on the ground in front of me. I remember saying, "Curtis! What are you doing, dude?" Lucas was right there and he said, "Curtis why are you peeing right here?" At this point, I'm thinking to myself that Curtis is tired. I tell Lucas that we gotta start getting ready to go because clearly Curtis is pooped out if he's peeing his pants. Side note: potty accidents are not out of the norm for Curtis, so this wasn't a red flag for me that something was terribly wrong with my son. 

Next I went ahead and did what anyone would do (right?)--I took him into the pool to rinse him off! And while I was in there with him, I started talking to him. I asked him questions. He responded to my questions, but without using words. He would nod his head "yes" and shake it "no", but he didn't use words. At one point I remember asking him if he was being silly (still trying to figure out why he wasn't talking). Still, no verbal response. He wasn't really looking at me during all of this, either, he was sort of looking off in the distance. Of course, all the while, I was starting to freak out more and more. While at first I thought he was simply tired, I was now starting to realize that something else was potentially happening. I saw a pool noodle float next to me. I grabbed it and put it in front of him and asked him to grab it. He did. I felt relief for about half a second. He still wasn't looking at me or talking. Something was definitely wrong.

I looked around the pool area for my other kids. The crowds had died down a little, thankfully. Lucas was still sitting by our chairs and was super close to us. I called out to him to go get his little sister--NOW! I still wasn't completely processing what was going on with Curtis, but I knew we had to get out of the pool and I had a feeling things were going to get worse before they got better. Of course, Lucas started to ask a million questions, "Why do I have to get her? Do we have to go? Why? Why? Why?????" AAAAAAHHH! Just do it!!!!! He saw I was serious. He finally left to get his sister. 

I went back to concentrating on Curtis, who was now staring off to the side, head tilted. He still was not responding to questions, not even with a head nod. I turned his head for him, toward me, so I could see his eyes, and all I saw was a blank stare. Nothing. No one was home.

Panic.

I got out of the pool, threw my sarong on around my suit and started high-tailing it out of the pool area. All I could think about was getting to the front of the resort. I saw my big kids slowly exiting the water slide area (which was actually pretty close by) and I yelled to my older son to grab our stuff and meet me at the lobby. At that point, he knew something was wrong with Curtis--and I'm glad I didn't have to scream it across the pool area to him.

The lobby/registration area was literally 5 seconds away from the pool and as soon as I got out of the pool area, I ran. I looked back down at Curtis and in that instant it finally sank in. I knew. It was a seizure. My heart was pumping so fast and, looking back, I can't believe my knees didn't buckle when I looked down at him at that moment. I was carrying him like a newborn baby--it must have looked so strange to anyone that bothered to notice. His eyes were still wide open and fixed, his head was still tilted to the side, he was drooling, and his head was starting to rhythmically twitch. Both of his arms were up near his chest and were starting to twitch, as well.

I reached the lobby and yelled to the closest concierge, "Call an ambulance, my son is having a seizure!". Hearing my own voice shocked me. I was loud, crying, hysterical! I went back into the breezeway area and put Curtis on the ground. Maybe my knees did buckle at the point, who knows. I know I wanted to be out there so my big kids could find me. They came right around the corner from the pool looking so worried. They saw me crying, freaking out, whatever I was doing, I don't even know--God--I can only imagine that scene for them. I just remember looking down at Curtis and seeing his face. His cheeks looked so puffed out to me. His eyes were still wide and fixed and his head still twitching. I didn't know if I should touch him, but I did. I kept telling him it would be OK and that I loved him and that someone was coming to help him. I remember staring at his chest, just watching it the whole time because I was afraid he was going to stop breathing. He looked so rigid and so wrong. Everything was so wrong.

I could hear my kids crying and asking questions, but I couldn't answer them. All I could do was focus on Curtis. 

At some point I picked him up and ran him up to the front drive (where you come when you check-in or valet park). I wanted to be right there when the ambulance arrived. I don't even know if this is proper seizure protocol, I'm guessing it's not. Honestly, if I'd have known how close the hospital was at that time, I likely would have ran him there! I was frantic.

People were gathering around asking if I had called 911. I don't recall if I answered them or not, but I do remember them asking me. I was talking to Curtis. I was telling him he was OK and that I was right there. I was kissing him and petting his hair. He started to spit up/vomit at one point so I had to put him on his side. People kept asking me questions. WHY DO PEOPLE KEEP ASKING QUESTIONS WHEN YOU ARE IN A MOMENT OF CRISIS? All I wanted in that moment was to hear the sound of sirens. 

My kids. My poor kids. They were sobbing, completely confused, terrified. I kept telling them it was going to be OK, but there I was on the ground in hysterics next to their non-responsive little brother. Not very convincing. At one point I threw Lucas my cell phone. He called my mom. He brought the phone to me and my mom was screaming, "What's wrong? What's wrong with Curtis???" She later told me that she couldn't understand a word I said to her--she said I wasn't speaking English. Somehow she made out that he was in trouble. I later texted her which hospital he was going to. They (my mom, dad, and husband) were already on their way up. 

After what seemed like hours, but was more like 5 minutes they tell me, the ambulance arrived. I gave them Curtis' info and they went to work. The hotel staff then went to work on me as I stood there like a zombie with my two older zombie children. You could throw a rock and hit our hotel room it was so close, so I gave my key to a staff member and he retrieved my purse, a shirt (I was still in just my bathing suit and sarong) and clothes for Josie (she was only in a bikini). The hotel staff said they'd give my big kids a ride to the hospital while I rode in the ambulance with Curtis. My head was spinning, and I said OK to everything.

As I sat in the front of the ambulance, waiting to go, I looked out the window and my big kids were standing there crying on the curb. My heart was broken. My kids were in pain--sad, lost, confused--and I couldn't be there to comfort them. I felt like the worst mother in the world. Yet at the same time, I knew I had to be in that ambulance. My little boy was still seizing! Before we drove off, two women came up to the window and asked if I'd like it if they rode to the hospital with my kids. They were mothers, too, and they said they'd be happy to go with them. I said yes (I was saying yes to everything, remember). I'm so glad I did. My kids talked about those ladies later on that day--about how nice they were to them on the drive over. A few days ago, I was on Facebook and was looking through my messages. I noticed I had something in my "other" messages folder. I opened it and found a message from one of the women that rode with my kids to the hospital that Sunday. I couldn't believe it. Instant tears. It feels to good to know that are people like this in the world--women like her that will take time out of their day to help someone that they don't even know. She made my kids feel safe and made me feel the tiniest bit better about having to leave them that day. I hope she doesn't mind that I'm sharing this (leaving her name out...):

Hi kammy. My name is ***** and I was at the hotel on Sunday when your little one was having his seizure. My friend and I helped get your wonderful older kids to the er. I just wanted to tell you what an amazing mom you are and how so brave your son and daughter were. I am sending all my love and prayers to you and your family - what a scary day. I hope your little one is all better and know those docs took good care of him. I hope this isn't too forward and pls no need to connect back I just wanted you to know that you and your kids are in our hearts and prayers. Pls take good care of you and your little ones. Happy belated Mother's Day to a pretty incredible mom!

Of course I wrote her right back and thanked her, but I haven't heard back from her yet. I don't know how I can ever repay her and her friend for their help that day.

The hospital, Eisenhower Medical Center, was so close to the hotel--we were incredibly lucky that day. We arrived in a matter of minutes. When they took Curtis out of the ambulance, however, I was shocked to see that he was still having his seizure. I knew this was bad news. Seizures aren't supposed to last that long. It had been a long time, over half an hour at this point. Luckily, a short while (and a few more meds) later, it stopped.   

I can't say enough about the team at Eisenhower. The nurses and the doctor were amazing. They were so gentle and loving with my boy, talking to him the whole time even though he was asleep. And they took care of me, too. Not to mention my two other babies that had to sit out in the waiting room for over an hour while I made sure Curtis was stabilized (I absolutely did not want them to come back while he was seizing, nor while he was shaking uncontrollably after the seizure stopped). The staff took great care of all of us.

What I can say can is this...nothing prepares you for a moment like this...

One minute we were drinking peach smoothies and taking silly photos and the next minute I was in hysterics, staring down at an empty shell of a little boy, my little boy, just hoping that he wasn't going to die. 

Shortly after he was stabilized, the doctor at Eisenhower came in to tell me that after speaking to the doctors at Rady Children's Hospital in San Diego, it was decided that they wanted him down there--partly due to the length of his seizure (they tell me it lasted almost an hour), but also due to his medical history. Rady was coming up to get him, he said. Via helicopter. My heart sank. To me this could not be good news, even though I knew he was going to be in good hands at Rady. Not to mention the fact that flying terrifies me, so the thought of Curtis traveling, without me, on a helicopter was not something I really felt like adding to this already high-stress day. 

Regardless, at around 5:15pm, approximately 3 1/2 hours after he first arrived at Eisenhower Medical, they flew him south. 

All I could do was stand in the parking lot and watch as they put my little boy, strapped onto a wheeled hospital bed, into that helicopter. I was frozen and in shock. How was all of this happening? 

40 minutes later I received a call that he arrived safely. 2 1/2 hours later, we arrived at Rady Children's and I got to see him again. 

The next two days would bring more answers...I'll save it for another post since this one is already so, so long (and it's taken me 2 nights to write!). 

If you've read all of this, thank you. I've shared it with a few close friends, neighbors, family members. I know others are wondering what happened and still have questions about what is next for him. I don't have all the answers yet, but we do have some. Hopefully I can get to that post soon. In the meantime, keep sending those positive thoughts for Curtis!

XOXO,

Kammy