We knew it was only a matter of time. Being off of medications, with a "horrible" EEG meant that the likelihood of a seizure soon was inevitable. That's why we're here. I thought I was better prepared for that.
Last night, Will couldn't sleep. He was tired and frustrated, and his leg muscles were moving a lot. I crawled in bed with him, in hopes that it would comfort him. That lasted for a few hours, but by 3am, he was screaming. I couldn't do anything. I called the nurse, who called the neurologist on call.
Because we're in the epilepsy monitoring unit, we're followed by a special team. The on-call resident didn't want to give Will any neurologic-type drug because she didn't want to affect the EMU's team plan. I told her that she had to do something. She called our doctor, who asked that we try some Benadryl. It seemed to take the edge off of Will and we both slept soundly until about 7 this morning.
Will wasn't himself, though, which I attributed at first to nights of terrible sleep. He was zoning out a lot, and not very interactive. By 8am, I pushed the seizure button because he had stopped repeating "mama" and "dada."
The nurses and doctors ran in. We marked the time, and just watched. Will vomited as he typically does, and then his eyes fixed. His tongue started clicking and he developed a twitch in his left hand. It was a typical seizure - save one thing. This was the morning, not bed time.
After 5 minutes, they drew a syringe of emergency medication and gave it to him through his IV. We waited. It didn't do anything. The seizure twitching moved onto his left leg and quickly to the right side of his body. They gave him another syringe of medication. Things slowed down a bit.
The doctor kept running out to check the EEG. The EEG tech ran in with a syringe of conductive gel and fixed some of the leads on Will's head - to ensure they were getting the highest quality information possible. Will was getting mad. Though he was no longer typically seizing, he developed a "donkey kick" in his left leg. It would not stop. He just kept kicking. He was getting mad because the emergency medication was making him sleepy, but the involuntary kicking was keeping him awake.
The doctor wasn't sure what to make of it. Will's EEG was no longer showing any seizures. She worried that he was having some type of deeper seizure that wasn't being shown on the EEG. She ordered him another medication that we had not yet tried, but the pharmacy told her that it would take about 15 minutes to reach us.
She decided that wasn't fast enough - if he was having a deep seizure, then there was a possibility that it had been going on for about 45 minutes. She paged the rapid response team because they carry the medication that she wanted with them. While I held Will's hand, our doctor and nurses cleared the room. Within 3 minutes, there were 15 new people in our room. Out of breath. They ran.
Our doctor explained the situation. Will was wailing. Time seemed to be going so slowly for me. I am sure that happens for most parents, in the moment when you realize you can do nothing. The head of the emergency response team - an attending physician in the pediatric intensive care unit (PICU) - served as the main communicator with me. She said that because the drug they needed to administer could lower Will's ability to breathe and the EMU doesn't have those types of monitoring capabilities, they needed to move Will.
They transferred him to the PICU. Again for me, time was moving so slowly. I just wanted Will to get this medication as quickly as possible. Nothing was quite fast enough, though I am sure that it was happening methodically and thoughtfully to ensure that they were doing the best thing for Will.
As Will was being attended to in the PICU, I called Nate to tell him what was happening. I know he felt helpless getting the call from me, being all the way in NC. I felt helpless and I was standing right next to Will.
They gave Will another syringe of the first emergency medication as they hooked up the oxygen. He threw up three times in rapid succession, soaking his pajamas and the back of his gauze head wrap. They gave him the medication that we'd been waiting for, and then we waited.
One by one, as Will's situation calmed down, members of the emergency response team left. Our attending physician from the EMU came down to make sure Will was okay. She squeezed my hand and I just lost it. Somehow, 2 hours had passed and I didn't even know how. Will was out of it, having had the seizure that we needed him to have... but these weren't the circumstances I had prepared myself for.
I was ready for a typical seizure. One that started predictably, and ended 8 minutes after we administered his emergency medication. Then while Will slept peacefully, we would discuss the findings with our doctor. But things weren't happening that way.
In the PICU, we were sharing a room with a little boy who needed regular suction for oral and trach secretions. Suction is what they used to put Will's leads on his head, and the sound makes him go nuts. So from his drug-induced stupor, he started screaming when that suction started from behind the curtain next to us. Again, there was nothing I could do.
The emergency medications that they used to stop Will's seizure have some negative side effects - they can cause some errant muscle spasms and agitation. Will got both side effects. His legs weren't donkey kicking anymore but they just wouldn't stop moving. He wanted to flex them. And he was beyond agitated. He was pissed.
He wouldn't stop wailing. He wasn't in pain. He wasn't seizing anymore (the EEG tech followed us to the PICU and hooked up a portable EEG so that they could continue to monitor Will's brain activity post-seizure). But he was crying and miserable. They gave him Versed to calm him down. He went to sleep and I left the room to collect my thoughts and make some phone calls.
I washed my face in the bathroom. I was ugly. Red, puffy face from crying. My eyes were still bewildered. What just happened? I was still in my pajamas. I went back to the PICU.
Will was agitated again. They gave him another mg of Versed and he calmed down again. They took his temperature, and he had a slight fever. They gave him Tylenol. I could hardly keep track of the drugs that had been put in his body in the past few hours. I looked at the clock. It was nearly 2pm. Time might have seemed to be going slowly, but this nightmare had been going on for 6 hours.
While we were in the PICU, Will's IV became blocked. He had to get a new one. Because of the vomiting and the flexing and the fighting in the past few hours, he was not well hydrated. Veins are hard to find when you aren't well hydrated, and they had to stick him 3 times before successfully landing the new IV. That made him pretty mad. The EEG tech came in to adhere a couple of EEG leads with glue and suction. He was getting rather pissed. Then Will managed to pull his IV out, and bled all over himself. Talk about adding insult to injury.
Will finally managed a 15 minute period of uninterrupted sleep. The EMU attending came back. She told me that now that Will wasn't having any more seizures, they were working on getting him back to the EMU. I was happy to hear that. I knew it was only a matter of time before the little boy next to us needed to be suctioned again, and the sound of it would jolt Will from his delicate sleep and send him into 30 minutes of screaming.
The attending also told me that they had gotten enough data on the EEG and didn't need to see any more seizures from Will. Their plan was to start his regular seizure medications as soon as possible. Thank goodness. It seemed unfair and cruel to make Will go through another seizure like this. I was glad that I didn't have to fight that fight.
We were transferred back to the EMU about 8 hours after we had been admitted to the PICU. Will was so happy to be back. I popped in an Elmo DVD as the nurses tended to him for a minute. Then I sat down. I have never had a day when I have felt so weak. Not in control. I felt guilty for bringing Will here, for pushing to get this testing done. In that moment, I hope that we hadn't been cavalier and arrogant. In that moment, I prayed that we had made the right decision by having Will undergo this testing and for putting our trust and safety of our son into the hands of this EMU team.
As Will enjoyed some quiet time with his favorite red furry monster, I sat in the chair by his bed and sobbed. The nurses knew that Will was fine - they kept coming in to check on me. The fellow came in to tell me that they were still analyzing the EEG and would be ready to have a "next steps" conversation in the morning. For now, they wanted us to rest. They stressed that both Will and I needed to rest.
The only question I had was why had this seizure been so bad, when it started off so predictably? Basically the answer is that Will's seizure medications are doing a good job of keeping his seizures at bay. Without that protection (as in the case of Will right now, being off of his meds for 4 days), the reaction to a seizure is amplified. It affected a larger portion of his brain off of meds than it does on them.
Thankfully Will fell asleep after eating some applesauce. He is back on his seizure medications, so we should start to see some improvement in his sleeping and attitude in the next 18 hours. It has been a long day. We saw "the big one" today and I hope we never have to do it again.