I do not title this entry “the scariest day” for dramatic effect; last night was truly a nightmare. This Labor Day weekend, we decided to make a trip to see Andrew’s family. His grandmother is turning 90, and his family is throwing her a surprise party this Sunday. We could both actually take time off of work to attend, which is a rare occasion, so we were in.
Yesterday, we left work around lunch time to pick up the kids and drive straight from there. It is about a 12-hour drive, not including stops along the way for the kids, so the earlier we could get on the road the better.
Around 6:00pm, the boys were getting hungry and we wanted to give them some time to run off some energy. We stopped at a Chick-Fil-A somewhere north of Cincinnati. Will had been complaining of a headache, and while we were in the restaurant he felt pretty fevered. Strept throat had been going around in his school, so I have just been waiting for the day for him to catch it. Knowing that he felt a little crummy, we gave him some Motrin, and within 20 minutes he was asking to play in the indoor playground set. Naively we thought, hooray problem solved.
We changed the kids into their pajamas, loaded them into the car, started a movie on the traveling DVD set we bought especially for this trip, and we were on the road again. Shortly after the movie finished, the boys fell asleep in their car seats, and Andrew and I began listening to our audiobook.
Then around 11pm, I heard Will rustling in the back seat. He had been tossing and turning for most of the ride, trying to find a position to be comfortable in while sleeping upright and fighting a fever. He is also famous for doing what we call his pee-pee dance; he starts squirming long before he tells us he actually has to go to the bathroom, and then we are scrambling to find a place to stop. I assumed he was moving around for one of those reasons. I was not prepared for what I saw when I turned to look at him in the backseat.
First of all, the car was really dark, so it was tough to see anything. But I could see something in the darkness, and when I finally could make out what it was, I realized I was looking at the whites of Will’s eyes. His eyes had rolled into the back of his head, and as I started scanning the length of his body, I then began to scream. Will was staring blank-eyed, his head cocked to one side at an awkward angle, drool streaming out the side of his mouth, and his right arm and leg making rhythmic, repeating motions. I screamed to Andrew to pull over, because Will was having a seizure.
Andrew immediately pulled the car off to the side of the road, and ran to Will’s side as he started examining him. Here he was, in full-on daddy-doctor mode, and I could barely even get the word “William” out of my mouth without bawling hysterically. Will continued to jerk and seize for what seemed like hours, until finally he went limp in his daddy’s arms. Then I really started to panic. The way his body limped and sagged in the car seat was really unsettling. He looked like a rag doll. Andrew kept giving him commands, like “Look at me, Will” and “Squeeze my hands”, and while you could tell he was trying to follow those commands, his body was not allowing him to do so.
There were moments when I thought I could not see him taking a breath, and in those moments I did not know if Will was going to survive. I seriously did not know what was happening to our sweet helpless boy, and I began envisioning having to give our own child CPR on the side of the highway. I asked Andrew if I should call 911, but fortunately we found ourselves in an area of Ohio that we were somewhat familiar with, and we knew there was a children’s hospital not far from our location.
The drive to the hospital was the longest 20 minutes of my life. I sat between Will and Nathan on the drive in, and I continued to talk to Will, asking him to squeeze my fingers, to look at me, anything to keep him from succumbing to the drowsiness he was feeling. Sweet Nathan had woken up by this point, and he did not make a fuss on our entire drive there. He knew his brother was in trouble, and he was concerned. I started panicking as I realized that the right arm and leg that were just moments ago jerking rhythmically were no longer even moving. I could not get any movement from either extremity, and my panic began to rise into complete terror.
We got him into the emergency department, and they took him straight back into a room. They checked his temperature, and he was running a fever. He was still drowsy while they put him in a hospital bed and attached leads to his little body. They ordered a CT scan, and he slept as the machine went whirring around his head. Those few moments of seizing zapped all of the strength out of my little boy.
As I watched Will in the CT machine, I could not help but think to myself that this is how those stories start when families discover their child has a brain tumor. Out of some random fluke seizure, they find a mass they never knew existed and their whole world is turned upside down. As I returned to Will’s room in the ER, I sat down next to my husband, gripping his hand. While we never said it, I knew we were both fearing the worst. The blessing and the curse of working in medicine is that you know too much; you know all the ways in which things can go wrong, and while you try to tell yourself to not fall down the rabbit hole, it is impossible when it is your child lying in the hospital bed.
The doctor finally came in after reviewing the CT results, and while she said the results of the CT scan were normal, she decided she was going to keep him overnight for observation. Silent tears of gratitude slipped down my face as the words sunk in: his CT results were normal. She explained to us that while this was most likely a febrile seizure, there were pieces of his seizure story that were concerning to her. She said that most febrile seizures last only 1-2 minutes, and they are convulsions all over the body – these are called simple febrile seizures. She said what we witnessed – a 5-10 minute seizure, with only one area of the body involved (focal area) – are signs that this could be a complex febrile seizure and they require a little more investigation. While the CT scan ruled out any tumors or masses in his brain, we needed an EEG to view the electrical activity in his brain.
Unfortunately, the technician that runs that test would not be available until the morning, so we would need to be patient and wait for that test to be run. Since the decision had been made to admit Will overnight, we were given a room upstairs on one of the pediatric floors. It was 5 am before we were transferred to his room; to say we were exhausted is an understatement.
We maybe had gotten an hour of sleep before the nurse for dayshift came in to assess Will. We ordered his breakfast, and before his tray arrived he was whizzed down to the EEG lab. My husband went down for the test with him as I stayed with Nathan in the hospital room. I kept getting picture updates of Will as the numerous amount of EEG leads were attached to his head. To see him smiling and acting himself in these photos was a huge relief; my baby was going to be ok. The worst of our fears was over, now we had to do deeper to find the real answer as to what caused this to happen.
After a few hours, Will returned to his room, and we awaited the neurologist to tell us the results. When she came to our room, her and Andrew exchanged pleasantries and then realized they worked together in their days at Rainbow Babies in Cleveland. It was a comfort to know we were in good hands and in a somewhat familiar place. She told us the results of the EEG were normal, given that Will had had a seizure. She said there were changes seen on the scan that showed some slower electrical activity, as to be expected just mere hours from the event. She said this seizure was either one of two things: 1) this was a febrile seizure, given that he had a fever during the time, or 2) a benign form of epilepsy.
When she said the words epilepsy, my heart sunk. However, she said if he were to have a form of epilepsy, this is the one to have. She said it starts at Will’s age, is brought on by extreme fatigue, and by the time they are 8-9 years of age, children grow out of it.
I am grateful for the team that cared for him. I am so thankful he is not injured, that he is safe, and that he does not remember the events that happened last night. I know there could be worse things. I also know that I will also feel more at ease once we run some more tests at Vanderbilt and hopefully come to a more final conclusion. We have another EEG scheduled with a neurologist at Vandy Children’s next Thursday. I just pray that we make it to my in-laws with no more drama, and the rest of the weekend runs smoothly. No more drama, please. This mama’s heart could not possibly take any more.