The Worst Day of My Life

Yesterday I mentioned that Noah had a seizure and I'm still having some trouble with it.  That experience is so much more than just a quick blurb in a recap post.  I constantly relive that day over and over in my head.

It was Valentine's Day.

A few days prior, I had been talking with Emmy's Immunologist.  She was in her usual sick cycle and we were coming up with a game plan for what to do next.  We had decided that if she spiked to 101, we'd bring her in to the office and have labs drawn.  Well wouldn't you know, on the 13th, I came home from work and she was blazing hot.  I emailed her doc, who emailed the team (while in labor) with the plan and lab orders. Seeing that email and having her in the bed with me, made my world crash in on me.  I had been surviving in "nurse mode" in respect to Emmy.  I was always thinking what we could test for, what this could be.  I never let myself just be a mom because I knew I'd break down.  Well February 13th was my breaking point. I cried all night and all morning.  I brought her in and had her labs drawn.  I spent the morning crying in people's offices because I just needed to. I had finally gotten to the point where I could mention Emmy's name without tearing up and I got the call I will never forget.  My mom was calling my cell phone at 1230 in the afternoon. My heart sank and I knew something was wrong.

"Something's wrong with Noah"

That's all she said before I couldn't concentrate.  Honestly, I didn't hear anything else. I was shaking and for the first time in my life, I didn't know what to do. I couldn't move my body. Thankfully I have amazing coworkers who handled the rest of the day for me. I grabbed my stuff and headed to my car. I called my mom back and finally realized what had happened.  Noah had been unresponsive for the past 15 minutes.  I called the pediatrician just to confirm that he was supposed to head to All Children's.  I called Mom back and told her to meet me at work.  By that point I was hysterical. By the grace of God, two of the doctors I work with were walking down the sidewalk and found me. Again, I'm so blessed to work with amazing people. One of the guys went with me to the EC.  He literally walked me there.  If he hadn't seen me, I'm not sure I would have ever made it there.  He was amazing.  He spoke to the EC doc for me to give them a heads up.  He waited with me until John showed up. He texted throughout the day. He stopped by to see us before he headed home for the day.  His wife texted me that night to make sure we were doing ok.  They are just good people.

Waiting for Noah to get there felt like an eternity. My mom was withholding some details because I was not in my right mind. When they showed up, John got him out of the car and he was grey. I'll never forget the color of his skin.  He wasn't responding to us. I've never felt so scared. Our room was ready for us and the entire EC staff was in our room.  About 10 minutes later, Noah started to answer questions but he still wasn't himself. Then about 10 minutes after that, it was like a switch was thrown.  His color got better, he sat up in the bed, and he started talking. I felt a little calmer after that.

I learned that he was unresponsive and not blinking for 10 minutes.  Then he started blinking but was still unresponsive and dead weight until he got to the EC.  On the ride over, his eyes were rolling in the back of his head. From start to finish, it lasted about 50 minutes. He was a trooper through his IV start, his EEG, and MRI.  He bonded with Emily, the Child Life Specialist.  She definitely made this experience a little easier on us all.  After about 6 hours, we were able to go home.  All of his testing was negative and we were to follow up with Neurology.  Later that night I remembered that a former coworker worked as a nurse practitioner for the Neurology group.  She answered all my questions, told me what to do if it happened again and helped set me up with the best doctor we have.  She did scare me a bit and told me that children with normal MRIs and EEGs have a 30-50% chance of future seizures.  Not exactly what I expected to hear.  That statistic alone has stressed me out more than anything.  I'm constantly on edge that he's going to have another one.

After seeing the Epileptologist, he sent us to Cardiology just to rule out any cardiac reasons.  Of course, we saw the best cardiologist All Children's has to offer! His work up was negative as well, which is such a blessing.  We are due back in 2 weeks to see Neurology again.

I'm thankful that we haven't had any issues.  He's had some instances where he spaces out which scare me but we've been fortunate that we haven't had anything more than that. And I'm hopeful that we won't have to go through this ever again.  It doesn't mean that I'm not a nervous wreck though.

My world was rattled that afternoon.  I got a phone call that I never imagined I'd get. I had that moment of sheer panic. I was hysterical. Literally hysterical.  It's a feeling I never want to feel again.

My sweet boy's mohawk the next day from the goo from the EEG leads