He has had his bottle on the deck and my dinner is waiting inside. We walk together through the door and I feel him turn to go back out, or so I thought. I look down and his head is thrown back, his eyes a distant stare. “Crap! Seizure!” I yell. My husband races the diaper bag to me. He pulls out the diastat, while I set the timer on my phone. We whip down his shorts and diaper to administer the diastat. Then turn on my phones video so I can show his neuro team the seizure. 1 min 30 sec.
He has only had one seizure in two years, and he is outgrowing his dose of diastat. We know we may need a second dose. He often needed a second dose even when the dose is right. On top of that we are visiting family out in the country, two hours and a ferry ride from home, from our hospital…watch for blueing. “Breath baby, mommy and daddy are right here. You just keep breathing.” Sometimes his diaphragm seizes with the rest of him and his oxygen levels drop. All of this is racing through our minds. Some of it we say, some of it we just know. The clock on my Iphone spins out time in slow motion as my son flies through his seizure in a superman pose.
Around 6 min, his pose shifts. At first I am relieved. I think he is coming out of it. Then I am terrified. It is intensifying. His expression makes me think of a death mask. “call 911!” I yell out. I can’t remember if we have seen this before. We are so isolated. What if he needs more than we can give? I almost give in to panic as my husband gives the second dose of diastat. We need to shut this down. There is no phone to call 911. That brings me back. There are things I have to do. I flip my phone from video to phone and call 911. “4 year old child with intractable seizures, some blueing please come quick!” Flip phone back to timer, 7 min
Once the paramedics come they are going to want to take him somewhere. I need to pack. We are here for the weekend and we are spread out. I make sure my husband is settled with my son. I tell him what my intention is, and I begin to throw things into bags. I run to the little guest cabin and hear the sirens, so I run past out to the highway. Everyone misses the turn off. There is no time for them to miss it. I flag them down and run them inside. We are approaching 15 min the seizure is loosening, but his eyes are still non responsive. I leave my husband to manage the paramedics and run to pack. My mother in law and a couple friends join in within a half an hour we have packed and loaded what it took me 4 hours to pack the day before.
I go back inside, the seizure stopped at 15 min. The paramedics are listening to his breathing to make sure he did not aspirate. We discuss the route home and how to negotiate ferry lines on Memorial Day weekend. We thank them and load “Buddy” into the car. The crisis is ebbing now. We still need to get home. I sit in the back holding his head in his carseat so he can breathe fully, and we drive in silence. Adrenaline is slowly coursing through our system. Some of it draining out and some of it going for a second round because we dared to think about the events of the last hour, the last 4 years, or God forbid the future.
We arrive at the ferry, get pushed to the front for medical reasons, and get home quickly. Thankfully. And he sleeps. My little puddle of son, my “Buddy” sleeps for the next 12 hours. We do too. We know we will need it, because to anatomy of a seizure does not end with the seizure. In some ways it begins there. “Buddy’s little body just ran a marathon in 15 min. Every single muscle in his body was clenched as hard as possible for 15 min straight.
Day one post seizure he wakes and seems okay, tired but happy. Every time I am lulled into thinking we are done. Then it is time to eat and he won’t. He bit his tongue and it hurts. I struggle to get enough food into him. Mid-day, the exhaustion catches up to him. The muscles start to ache. He want to pull to a stand and can’t. Worse, he does not understand why. This is when the whining and crying begin. He is so frustrated and tired and confused and probably scared. I do my best to comfort him, to give him Tylenol and Naproxen to manage the aches. I rub his muscles with arnica. I hold him. He sleeps, a lot.
Day two it really hits. He wants so badly to get back to life. He wants to stand at the sink and play in the water and ‘help’ with the dishes, but he is not so stable on his feet. He cannot hold on with just one hand anymore. He has to be careful. Almost falling scares him as much as falling. He wants to play not nap, and is mad that his body won’t do it.
This pattern continues like ripples on a pond, until it dissipates a week to a week and a half later…unless he seizes again. This week we have had 4. There have been times in his life when he had up to 15 of these in one day. No wonder the little guy could not pick up a toy and bring it to his mouth. He was exhausted.
I have never been much of a church goer, but I am praying, every day and with great earnest. I really need there to be someone who can help, because I feel so helpless. My mother told me she is praying to her mom. Granma was a feisty woman who took no guff. She worked in the church and was a firm believer. My mother said she figured if anyone could get things done up there it was Granma Marg.
Please God, help my little boy. Granma, if he is busy, can you make sure he hears? I don’t want to watch my sweet, shiny little boy disappear.