It is 11:00 PM and Andrew comes in from working on the set of “Sleepy Hollow”. He looks like a lumberjack in his layers upon layers of cold weather gear. We are finishing up packing for our one day trip to Boston for our doctor’s appointment. Our ambitious plan is to be gone from our house for 14 hours and take 4 plane rides in the same day. We’re old pros at this traveling show, and so we print out the “One Day Pack List” and check off each item. I long for the day when ½ of our backpack space won’t be filled with diapers and wipes. One day!
At 11:30 we are finally asleep. Out of our slumber we hear a very loud crash above our bed (which happens to be Oliver’s bedroom floor), and realize he is having a seizure. We rush upstairs to comfort him, keep him safe and tuck him back in. At 11:36 we hear the loud crash again and the sound of him thrashing around his room. We tuck him in and stay for a few minutes this time. After another seizure we bring him into our bed to try to figure out what is happening. We try and get a video of the seizures that are happening every 5-7 minutes to show the neurologist. They are brief, but seizures nonetheless. Once they are over, Oliver goes right back to sleep. We doze off too, and every 5-7 minutes our bed soon becomes a sleep deprivation torture chamber.
After this continues for another 25 minutes or so, we decide to give Oliver his rescue medication; which should hopefully stop this cluster of seizures. This medication must be given with an anal syringe so that it can work fast. We give him the med, but the pattern continues unabated. His breathing is still steady, a good sign.
I pull up the Mass General Emergency Number and ask for the “Epilepsy Fellow on call” to be paged. Andrew and I are unsure if we can give Oliver another dose of his rescue medication. Diastat can cause respiratory suppression, and that can be very serious.
We keep falling asleep and bolting up. Asleep, awake.
After 45 minutes and no call back from the fellow we decide to give the second rescue med. It does not work.
The seizures continue. At this point it is 1:30 at night we aren’t sure what to do. If we call 911 or go to the ER we will be admitted and miss our flight to Boston tomorrow to see the very specialists we are so desperate for...our local hospital has not been super helpful in situations like this; we need our team. We are torn.
Andrew has the good idea that if we keep him awake it may help the seizures stop. Somehow these seizures are clearly linked to his sleep. We give him the iPad and he stays awake for 20 minutes, seizure free. As soon as he falls asleep he has a seizure again. It is 1:50 am and we are desperate for sleep. In one of his seizures did we see one of his old infantile spasms (the catastrophic kind of epilepsy)? We’re seeing at least 3 distinct kinds and maybe 4 different kinds of seizures. This is not good.
We decide that one of us will sleep on the couch while the other one stays in our bed with Oliver. Andrew hits the couch first, but by 3:00 I’m asking for help. I simply am not strong enough to contain Oliver when he gets the adrenaline rush on the thrashing type of seizures. He is so out of control in the middle of the seizure. I sleep until 5:00. Andrew says the frequency slows until at 4:30 Oliver finally stops seizing and sleeps. Andrew sleeps a grand total of 45 minutes.
In the morning Oliver seems OK, albeit tired. We are happy with our decision to go to Boston and get their opinion/advice. We pack an overnight bag just in case. The plane rides to Boston go well and Oliver is happy as a lark on his iPad during the flights.
The thing about being the parent of a medically fragile child is there are so many decisions and none of them are benign. If you do one thing it could do harm in another way. We envy parents whose biggest fear is giving too much Tylenol. No decision is without consequences with these kinds of medications and these kinds of outcomes.
When we get to the airport in Boston, Carolyn is waiting for us. Her smile is the most beautiful thing we’ve seen all day. We have 30 minutes before our appointment, so she says we should experience the “best hazelnut Latte in Boston” and we say that sounds amazing. We sit in her warm car, with a DVD playing for Oliver, and with a bag of snacks she has provided. It feels like the sweetest harbor in the midst of an insane 24 hours. Carolyn brings us the lattes, with foam hearts on the top. I think of how much kindness one can extend in such a simple way. That gesture, a beautiful and tasty latte, felt like a gift from God. It really did. In the midst of the darkest times, there is always light...if you have eyes to see it.
We saw it in the foam heart floating on top of the latte, and we felt it in Carolyn’s hug standing on the airport sidewalk.
At our appointment we go over lots of things, including a plan for what we should do should a night of seizures happen again. Armed with this knowledge (among lots of other things) we head back to Wilmington. On the tarmac for the 3rd flight of the day, Oliver falls asleep and the seizures start again. The flight attendant can see that we are struggling and comes by to check on us. Initially she is worried that perhaps Oliver shouldn’t be flying at all. We have a momentary panic. Should we get off the plane? Stay in Boston? We see her talking with her coworkers about us.
We quickly administer a dose of Vimpat (oral medication) and wait. The minutes tick by. Finally, all looks peaceful with Oliver. We assure the flight attendant that we’ve made this trip many times, and under worse circumstances (unfortunately true).
When she comes around to ask if we want a beverage, we both say cranberry juice. She says, what about a REAL drink on the house? A beer or glass of wine? We say, “Oh you don’t have to do that”, but she insists. She says “I’d love to do this for you”.
Twice in one day. There is kindness in a cup.
Distilled into liquid comfort.
It warms us from the inside out.
A simple human interaction that distracts from the battle against the seizures and the race against losing Oliver’s cognition.
I posted a photo on FB with this quote.
It sums up how I feel about all of this. Our future with Oliver is as parents and caregivers. There is every reason to think it will be harder, but we are also much stronger now. For we know that as much as we’ll have hard times ahead, we’ll also have unexpected cups of kindness lighting the darkness.