Wednesday the 6th seemed like a normal enough day. I dropped Alex off at school and went to work like normal, no worries, no fears. Looking back, there were some warnings.
Alex had bitten a couple of classmates at school for minor offenses. A little surprising since that's not usually his first reaction. School had checked his temp and he was normal. We had chalked it up to being Blind, Autistic, and non-verbal. Hard to make people understand you when you can't communicate. He spent some time in the Time Out chair.
About half way through the day while I was at work, I remember hearing a voice say, "Seizure." My Father is so kind. He usually warns me when big things are coming, and I am so very, very grateful He does. I know that we are in His hands and that He is totally aware of what is happening in our lives. I am so thankful for a loving Father who watches over us and I know that whatever happens we'll get through.
As it would work out, my phone battery died about 11AM.
12:38 PM Alex had a 3 minute and 45 second seizure - the kind doctors call tonic clonic, most of us know them as Grand mal. Then the school had to track someone down - I was not answering. They called the house. Poor Lizzy got that call. She called me, still not answering (dead phone). She called Daddy. He called me. I called VIPS. I called neruo - and got no one. Leave a message for the nurse and they'll call back within 24 hours. Ugh! Called the pedi. They said to go into the ER.
Jason and I meet at VIPS. Our boy was hot, stiff, and so tired and groggy. We headed to the ER. I entered through the ambulance doors - oops - and they immediately had us in the trauma room, which was a blessing later on.
Of course, they had to rule out the shunt. The x-rays and CT scan that are so normal to us now were done. And they were normal for him, so not a shunt failure.
They took his temp and we discovered he was at 103.7. The word febrile seizure started to float around and my heart settled a great deal. Febrile seizures I can handle - epilepsy I don't want any part of!
Alex was given some Tylenol and left to rest. I'm feeling OK at this point. We'll go home and just never let him get a high, high fever again. Crisis averted.
Except then Alex stiffen, his eyes rolled back in his head, and he had another seizure. I yelled at Jason and he ran out into the nurse's station. We had ten people in that room so fast. The attending calling the event. The nurses filling him up with ativan and fosphenytoin. The respiratory therapist bagging him - because we learned, since he was all hooked up to the monitors, that my boy stops breathing when he seizes.
That little adventure earns us 24 hours in the ICU.
After 24 hours in the ICU, he hadn’t had another seizure, so they let us head to the floor.
We spent the night, thankfully Jason brought me up some clothes!
And then everything changed. I got a visit from the Neuro team. I asked her, not to be rude, but y’all said you wouldn’t round on him because it was just a febrile seizure. Well, things changed. In other words, they finally bothered to open his chart. Because I learned that a seizure can only be called a febrile seizure if they start before age five (we are almost five) and (most importantly) they are neuro-typical. My sweet boy is not neuro typical – not after a bilateral grade 3 brain bleed and a diagnosis of autism. So they told me we have just been lucky we haven’t seized before. And now that we have opened the gates, expect more. That was a fun conversation. And for anyone that has never spent days in the hospital, when you are standing there in your PJs, stinking from not having a shower, so exhausted and worried, with a group of people in white coats standing around you who are silently staring at you, you really aren’t at your best to be making life altering decisions. They wanted to start him on seizure meds. They wanted him on them for a minimum of two years – and the doctor was not nice. If you are going to give someone bad news and totally turn their world upside down, at least be kind!
I called and talked with Jason. I called and talked with my sister who has a lot of experience unfortunately in this seizure world. All together we decided to wait. It seemed to me we were talking about two things – a virus that had caused a high fever – and epilepsy. I needed to see epilepsy without the virus before we medicated him. Those meds would have side effects. Side effects we would deal with if we had to, but if we didn’t need to, then I don’t want to! Poor Alex has so much against him already, let’s not add another layer he can’t control. The doctor wasn’t pleased, at all. But we do have a follow up appointment to further discuss our options. I’d also like to see an EEG to see what’s going on in his head before we start changing his behavior and personality with drugs.
Finally, Brother came back to us! I was so grateful. He was still a little dizzy, but he was dancing and spinning and happy. We went home. And we now watch him like a hawk till we can see our neurologist, the kind one, and get some testing done.
Here’s to you Brother – we love you so!!