The Seizure We Never Saw Coming

Four days later, and I finally feel like I am able to breath and relax, and am hopeful we are getting back to normal around here.  I may have even slept last night, which was wonderful!
I really contemplated whether or not I would or should write a blog post about Levi's seizure.  I thought it may be a bit morbid to talk about, and was it really a memory that needed to be remembered!?
Well, I obviously decided to write about it (hence, you are sitting there reading about it!), and here is why: Sometimes the bad, scary, terrible, awful, unimaginable moments in our lives are the very moments we should NEVER forget.  These are the moments that we often gain the most insight from - the moments that define our reality and remind us of our mortality.  These are the moments when you realize you can not get through life on your own: You need help, love, support, and encouragement from your spouse, your family, your friends, your community, your GOD.  These moments in life happen and your faith in our almighty Creator is reaffirmed, because in that moment you realize there is nothing you can do...nothing,absolutely nothing...but take a breath, let go, and let GOD hold you.  And it's in these moments that you realize that GOD did just that:  He held you.

 Levi woke up that morning acting quite normal.

He insisted on holding Lexi when they woke up.  No, he's not biting her, he's giving her a kiss.

Again, this is a hug, not a left upper cut to the jaw. =)

   Gradually throughout the morning he began acting very lethargic and wasn't interested in eating or drinking, or even getting up off the couch.  I checked his temp and it was 99.5, so I gave him some Tylenol and we laid him down on our bed to watch a movie.  We really didn't think he was that sick.  In fact, we had a date night planned that night and we were still in the mindset that he wasn't sick enough for us to cancel and stay home.  He spent all morning lying on our bed, watching his beloved Veggie Tales.  About 2 1/2 hours after getting Tylenol, I decided to lay him down in his room to take a nap.  We figured he would take his nap and most likely wake up feeling good as new.
Our normal nap time routine is to lay him in his bed, give him some hugs and kisses, and then leave.  He usually will play with his little stuffed monkeys for a bit, sing to himself a while, then roll over and fall asleep.  This time, thankfully, because he wasn't feeling well I decided to hang out with him a bit before he fell asleep.  Per his request, I sang "Twinkle Twinkle," "Jesus Loves Me," and "You are My Sunshine," and he was finally starting to fall asleep.  As he was drifting off his body twitched and woke him up.  He looked at me, said "Mama,"told me a little about the movie he had been watching, then rolled over and started to fall asleep again.  Same thing happened a second time.  And again he looked me in the eyes and said "Mama."  I softly told him I was there and to go to sleep.  Then the seizure started.
Levi's seizure lasted 5 minutes.  FIVE minutes!  I was cognizant enough to look at the clock when it started and when the convulsing stopped, and it lasted five minutes.  A typical febrile seizure lasts 1-2 minutes, and Levi's more than doubled that.  Once I realized what was happening I screamed for Moises and started pounding on the window, knowing he was outside in the back yard.  He rushed in, took one look at Levi, yelled at me to turn him on his side and start praying, and he immediately called 911.  Moises screamed again at me to pray while waiting for the operator to pick up.
Five minutes.  Five minutes is a really long time to helplessly watch your child convulsing.
I prayed.  I don't know what I said, but I prayed.  At some point nurse in me kicked in and I started to assess him as though he was my patient, and went through the ABC's.  He was making noise and gasping so I knew he had an airway and was breathing.  I checked a pulse.  I'm not sure why I was checking for a pulse because he was breathing, but I did.  He was convulsing too violently for me to feel a carotid, so I checked a radial pulse and still couldn't find one due to the shaking.  I remember staring into his eyes at his pupils making sure they were still equal in size.  I had to sit back and look at him, and repeatedly reassured myself that he was still pink (circulation), still grunting and gasping (breathing), and therefore still had an airway. When the reality of knowing I had no control sank in, it was a devastating revelation.  I recall crying and repeating out loud to myself "I can't fix a seizure, there's nothing I can do! I can't fix a seizure!"  I will never forget that moment when I realized there was nothing I could do but pray.  Eventually, the mom in me came back. I stopped, leaned over him, began brushing his hair with my hands, gently rubbing his convulsing back, and told him I loved him.  Five minutes is a very, very long time.
 
When he finally stopped convulsing, he stopped breathing... then turned blue.


Pale, dusky, cyanotic, limp...blue.


I honestly have no idea how long he was blue.  After thinking back over everything and talking to Moises about it, he was probably only like that for 30 seconds or less. But our child turned blue in the arms of his daddy, and was blue long enough that Moises feared he would need to start CPR.

EMS arrived shortly after, and as they reached him, thankfully he was no longer blue.  They gave him oxygen, and 12 minutes after the seizure ended he finally became responsive and started crying (strange, but the first thing I did when I heard him cry was look at the clock again).  We are so thankful that EMS arrived so quickly!

Due to the length of time his seizure lasted and the fact that he took such a long time to respond to us, EMS made the decision that he needed to go to the hospital.  Moises handed Levi to me, we wrapped him up in one of his blankets, grabbed his monkey and we loaded up in the ambulance.  At this point Levi's body was still very stiff and rigid, he wasn't moving his left arm, and although he was screaming and crying and calling for Mommy and Daddy, his eyes were both still fixated up and to the left, and he couldn't focus on us.  His eyes were open, but he was staring right through us.
Levi and I shared our first ever ride in the back of an ambulance that day.  I have often joked that Levi's reckless, dangerous, and boyish daily activities would score him a tour of the ER.  However, I always imagined it would be due to a bump on the head or stitches somewhere... I could never have imagined we would be there as result of a seizure.  It was during the ride to the hospital that Levi finally started "coming to" and was able to focus his eyes on me.  He was still very upset and crying, and started asking me for some milk.  What a beautiful moment that was!
At the hospital Levi gradually started acting like himself, or rather a very tired and exhausted version of himself. 

Resting in the ER with his favorite monkey, George, and the bear his EMS buddies gave him.

He surprised our nurse, Shaun, and his ER doc, Dr. Mullen, by how calm and cooperative he was, as well as his politeness by saying "please" and "thank you."  I am so proud of him and how he handled himself at the hospital.  He survived the IV placement with just a small whimper, and managed to get through a CT scan and a Lumbar puncture without requiring any sedation (although, I would be lying if I didn't mention he put up quite the fight during his LP, and rightfully so in my opinion!  One of the nurses who was helping to hold him was a sweaty mess when it was all over, and so was Levi. And props to mom and dad for also surviving while assisting him as he suffered through such a quick, but scary procedure).

All of Levi's tests and lab work came back negative; Praise the LORD!  What did that mean?  Well, it meant that the seizure wasn't caused by a brain tumor or an infection such as bacterial meningitis.  The diagnosis was then made that he had suffered from a complex febrile seizure (The length of time the seizure lasted as well as the fact he had two focal points - left sided weakness and eyes fixated to the left - are what differentiated his seizure from being a very common simple febrile seizure.)
The good news is that febrile seizures in general are very benign, meaning there is little concern that he will suffer from any lingering side effects and the probability of it happening again is also quite small. Dr. Mullen gave us the statistic that at least 1 child in every kindergarten class has most likely suffered from a febrile seizure.  However, since Levi's seizure was deemed complex, we were instructed to have him followed up with his Pediatrician as soon as possible. As time continued to pass at the hospital, Levi continued to show improvement.  By the time we were discharged home, he was chowing down on graham crackers, drinking milk and water, and even dancing and laughing with "Wissa and Pasta Deee" aka Alissa and Pastor D. (Our AMAZING friends Derek and Alissa drove Moises to the hospital and stayed with us until after we were home and tucking the kids into bed.  I can not express how grateful we were to have them there, and the calming effect their presence had on us.)

Finally home.  Exhausted.  He fell asleep within minutes.

So now here I sit, four days later.  At this point, I would love to be able to sit back and say to myself, "Eh, no big deal.  This happens all the time, probably will never happen again. Sure was scary, but happy to have that behind us!"  Yet, there is still some concern that his seizure was actually NOT caused by a fever.  After examining Levi, studying his chart and reviewing all the details of the incident, our pediatrician is not convinced the seizure was caused by a fever.  When EMS arrived his temp was still only 99.4 (2 1/2 hrs after Tylenol was given), and his t-max at the hospital was only 100.4.  Febrile seizures are typically caused by a rapid spike in temperature in children, yet we have no indication to show that was the case with Levi.  Also, 5 minutes...his seizure was more than 2 times longer the amount of time the typical febrile seizure lasts. Bottom line, he will need to be followed up by Seattle Children's Neurology to rule out any underlying seizure disorder.  The likelihood of that is small, but it must be checked out, which we are totally okay with!  We would rather go through every test in the book and find nothing wrong, then suffer the consequences if there IS something wrong.

Silly grins and smiles the next morning.

LOVED seeing his smile return!

On that note, feel free to say another prayer or two for our family.  Levi should be seen within the next 6 weeks, but until then we will be facing a small amount of uncertainty.  We are so thankful that God is control, and we have never once doubted that he has been holding us and carrying us through these past few days. He has promised to take care of his children, and we are holding tight to that promise.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 

Philippians 4:6-7