Our mornings before school with Little Man are pretty easy now that we have a solution to the
Bed Wars. We go downstairs and bring him up from his room around 7:15. He seats himself while we make him a breakfast of dry cereal, toast, and milk with Pediasure or yogurt in it for calories. At 7:58 I walk upstairs and grab him some clean socks from the laundry room, at 8:00 I brush his teeth, and we are outside waiting for the bus by 8:04. It's a simple routine and both Little Man and I love the ease of routine.
On this particular March morning it was business as usual. Hubs had brought Little Man upstairs that day because he was running late for work and I was savoring an extra ten minutes of sleep. Little Man was eating breakfast and I plodded downstairs half asleep to kiss Hubs as he walked out the door. We were talking about something and so he was going to be even more late and raced off at about 7:50.
At my usual 7:58 I glanced up at Little Man who was finishing up his toast and headed up for his socks. When I hit the bottom of the stairs at 8:00, I instantly saw something was different. Little Man's eyes were unfocused, he was staring off to the right of the room and looking at nothing. I went over to him and tried to turn his head to face me and a trail of drool came out of his mouth. As I kept repeating his name, his head wouldn't turn and suddenly his eye started twitching. I called Hubs immediately and told him I thought something was happening and to come home right now. I put him on speaker and kept yelling at Little Man to look at me, to focus, and then I just started sobbing. Hubs assured me everything was going to be fine but that he'd turn around and see if something was wrong.
When he walked in the door minutes later, Hubs took one look at Little Man and swept him out to the car. Little Man was able to be guided out the door but definitely wasn't walking well. They left for the hospital and I called my in-laws to come stay with the babies while I tried to pull myself together enough to make the drive, and I got to the hospital by 8:45.
I write these exact times because I don't know how else to explain how fast this all happened. One minute things were absolutely normal. The next minute my heart was in my throat and my world was upside down. I went through worst case scenarios in my head as I drove.
When I walked in to Little Man's room at the ER, I saw Hubs in the corner of the room and he had been crying. I think that's when I let myself start falling apart. Little Man was still seizing, because that's what we confirmed was happening - his first seizure since he was 2 days old. This smaller local hospital was doing everything they could to help him, but we could tell by the tense atmosphere in the room that we wouldn't be staying in this ER for long. Hubs and I held each other and cried. We held Little Man's hand and whispered to him that we were there, but his seizure had gotten stronger and he was completely unable to react to us. His eyes kept twitching and his jaw was clenched shut. Watching him got harder and harder the long we sat there, and the longer the seizure went on the less hope we had that things would be okay.
The doctors had placed a mask on him to help him breathe. They'd tried two doses of an anti-seizure medication and nothing was helping. At 9:30 they reached his neurosurgeon at Hopkins and they told us they would be taking Little Man to Baltimore by helicopter as soon as it could get there, and if his seizure wasn't under control by then we'd have to put in a breathing tube - an option that could cause further complications down the road and that he was hoping to avoid. Finally, Hopkins and the ER approved a final, different seizure drug before the helicopter arrived, and at 10:15 his seizure was over. It had been over two hours. I didn't know anyone could seize for two hours.
*Side Note - As I was watching my Little Man seizing on the hospital bed, I received an "emergency call" from Hopkins intake. I raced out to the phone at the nurses station assuming I needed to hear about what the next steps were before the helicopter arrived. Which was true - they wanted to validate my insurance and make sure we could afford the $400 co-pay for the helicopter ride, or they wouldn't be taking him. Again, this is while he was actively seizing and they could not get it under control. I don't think I've ever been more angry in my life.*
Shortly after his stabilization and my approval with the insurance company, Life Flight arrived. Originally we'd been told I'd fly up with him, but the helicopter had no space. We raced home and met the in-laws to let them know we had to drive up north, and to pack a bag. After our morning, we didn't think we'd be leaving Baltimore that night or even anytime soon.
But when we arrived in Baltimore a few hours later, our worst nightmare had turned into a relaxing afternoon at the hospital. Little Man was fast asleep, which the surgeons and neurologists said was very normal after such an intense seizure. His neurosurgery team recommended we do some testing to rule out a shunt issue, but neurology was fairly confident that with medication he could leave the hospital that evening. My Mama Bear defenses were still on high alert from the morning, so I insisted that he wouldn't be leaving the hospital until every test was done and any shunt issues completely ruled out. Luckily the surgery team was on our side, and agreed that a night of observation wasn't out of the question.
That night we had an EEG, which we hoped would show no further seizure activity and would also show us if this prolonged seizure caused further brain damage. Little Man was waking up a bit more from his seizure and so this was tougher than expected, but we got enough results to confirm two great things - no seizures were happening, and although there was some brain damage, it didn't appear to be new.
The next morning, we got the all clear to head home. We were given a choice of two anti-seizure medications for Little Man to be on for the next few months. One of them would require weekly blood tests to check for liver damage, the other had side effects that caused behavioral issues in children. We went with the latter, and he will be on that twice a day for the next few months at least.
We left Baltimore that morning with a few answers, and a few questions. Epilepsy brought on by the beginning of puberty was our official diagnosis. The seizures he had as an infant had a dormant phase and now he could be in for a period of many seizures, or never have one again. There isn't a way of knowing unless we take him off the medication again. We also don't know why the seizure was so long or if he'd been possibly having smaller, unnoticed seizures for a time. He used to have a habit of stopping an activity and staring blankly into space for a moment or two before continuing, and since he started his medication he no longer seems to do that.
For now, things are back to baseline. At 7:50 this morning he received one of his twice daily doses of medication, and by 8:04 he was at the bus stop. He's the most resilient kiddo I've ever known.
