A Fail....and Merciful Grace

Even as extremely hypervigilant and careful as we epilepsy parents are, sometimes we fail.  Sometimes we make mistakes.

This is an account of one of those mistakes. 

Several weeks ago on a Tuesday, Awesome was not feeling well.  She'd seemed somewhat "off" all day.  Unusually tired and unusually emotional, yes, but also off all day in ways that I couldn't quite put my finger on.  My sixth sense told me that she was likely on the verge of a big seizure.  But I wasn't sure.  And so, when Awesome finished her schoolwork, I debated what to do.  Should I or shouldn't I take her to swim practice?  The part of me that wants to believe that Awesome is a normal kid was telling me that exercise is good for her and could help her feel better.  I'd seen it transform a tired, blah Awesome into a happy, energized Awesome in the past.  And anyway, why should a vague feeling of unease be a reason for Awesome to miss swim practice?

But the other part of me, the part that is more cautious and that realizes that intractable epilepsy burdens Awesome with all sorts of special needs and circumstances that require responses different from the norm, thought that having her go to swim practice that afternoon would be both crazy and cruel.  And that more cautious--and perhaps more realistic--part of me also worried that the likely result of my stubbornly insisting (against my gut feeling of unease) on having Awesome go to swim practice, would be a major convulsive seizure in the water--something that has yet to happen, but about which I worry...a lot. 

And so, in the end, the fear of a possible seizure in the water forced my hand.  The cautious part of me won out, and so I told Awesome that she wouldn't be going to swim practice that afternoon.

Instead--perhaps somewhat foolishly--I suggested that we take a quick shopping trip to get party favors for her birthday party coming up the next weekend.  Perhaps getting out of the house for awhile would help rejuvenate Awesome.

As it turned out, the shopping trip was just what was needed.  Awesome quickly revived; she became animated.  Her energy level increased substantially.  And best of all--while we were out and about--the steady drumbeat of her little seizures quieted--and stopped; no more little seizures.  Things were going so well--and we were having so much fun--that what was supposed to be a short shopping trip to one nearby store, soon lengthened into a shopping trip to three different stores scattered around town.

By the time we arrived home two hours later with all the party favors and other goodies, Awesome no longer seemed off; a big seizure no longer seemed imminent. I felt like we'd dodged a bullet.  A seizure bullet. The choice to skip swimming and go shopping instead had been a good one.

David (my husband, Awesome's dad) arrived home (from work) a few minutes after we got home.  And although it was already dark outside and fairly late--so that we should have hopped right into fixing and eating supper--none of us was hungry.  Instead, we simply wanted to catch our breath, and to relax for a few minutes.  And so, because Awesome settled down to relax on the couch in the schoolroom while David and I were planning to relax in the den and the kitchen, I went to retrieve my laptop so I could monitor Awesome via video camera.  Because of a strong history of status epilepticus (seizures that don't end on their own but go on and on and on until they are ended with emergency rescue drugs) and because of the fact that her current convulsive seizures come on very quickly and often endanger her, Awesome has to be very closely supervised pretty much 24-7.

But before I could get the video monitoring system up and running, Eli, one of our young adult sons, called.  The call brought unexpected news of a possible job change and move to another city.  Eli wanted to talk through the pros and cons of his choices with us.  We put him on speaker phone so both David and I could be a part of the conversation, and, before we knew it, the three of us were lost in discussion--absorbed in talking through the merits and implications of choices. 

And so, though I'd had every intention of getting the video monitoring system up and running within a minute or two of retrieving my computer, it simply didn't happen.  1 or 2 minutes became 5, and then 10,  Which became 20.  And then 30.  And then more than 30.  And yet, we remained oblivious to the fact that I had dropped the ball.  Awesome--whom we never let go unmonitored for more than 5 minutes at a time--simply wasn't being monitored.  At all.

Finally, during a natural lull in the conversation, with horror David and I both realized--at about the same time--that I'd never gotten the video monitoring system up and running--and that a lot of time had passed since we'd last checked on Awesome.  Too much time. Hastily handing me the phone--which was still on speaker phone--and glancing at his watch, David hurriedly rushed out of the room, declaring, "It's been 36 minutes!  I'd better go check on Awesome!"  Awesome had been unsupervised for 36 minutes--an eternity when it comes to seizures.  As a wave of worry passed over me, I whispered a silent prayer that our glitch in monitoring had occurred during a period of big seizure grace.  Generally speaking, the odds were in our favor.  After all, Awesome isn't seizing 99.99% of the time.  Still, because Awesome had been "off" earlier in the day--attempts to reassure myself weren't as comforting as they might have been. 

I heard David calling out to Awesome as he hurried down the hallway.  There was no answer.

As soon as I heard David loudly calling my name a few seconds later, I knew we were in trouble.

Running back the hallway,  past the empty schoolroom, into the back hallway, I was both overwhelmed and frightened by the scene that awaited me.   A seizing Awesome was lying prostrate--face down on the floor--half in and half out of the bathroom, her legs stretched out behind her.  Only the upper part of her arms, pressed in close to her body, were visible;  the lower halves of her arms from her elbows down (including the part of her arm with her Empatica Embrace seizure detection watch--which had failed to sound because her body weight had restricted her arm movement) were trapped under her body, beneath her chest.  It was clear from her positioning that she'd fallen without attempting--because she was already unconscious--to break her own fall.  It also seemed likely--because her head was under the porcelain pedestal sink--that she'd hit her head on the sink basin as she'd fallen.

David was struggling to roll Awesome onto her side.  The side is the best position for seizures.  It keeps airways clear, and helps prevent aspiration.  I helped by turning Awesome's legs and hips first; her upper body followed easily.   As we succeeded in rolling her onto her side, we were astonished to see Awesome's laptop emerge from under her chest.  She must have been holding it when she fell.  It had apparently snapped shut,  pressed (and sheltered) between her chest and arms, with her arms hugging it to her body--as she hit the ground.  We pried her fingers from around the computer and set it aside.  There was no time to worry whether her laptop was broken.  It wasn't our first priority.  It was just a computer; it could be replaced.  Our daughter could not.

Now that she was in a safer position, David checked his watch quickly so as to time the seizure. There was no way of knowing how long the seizure had already gone on, but it was important to know, from this time forward, how long it would continue.

We needed to administer Awesome's emergency CBD.  Rescue CBD can help slow or stop a seizure; it also shortens post-ictal (after seizure) impairments and makes them milder.  CBD soothes the brain and helps protect it from damage. Quickly pulling the oral syringe of CBD from the bag of rescue meds, I carefully discharged it into the outer pocket of Awesome's mouth.

Now that I'd given the rescue CBD, my mind was racing to assess the situation and figure out what to do or not do next.   Because Awesome had fallen onto the hard tile floor without attempting to break her fall and because she'd also likely hit her head on the sink as she fell, physical injuries--and even a concussion--were possible.   No doubt we should evaluate Awesome for injuries and then decide whether to seek medical care for them,  but what concerned me far more right now--what was most pressing--was getting Awesome's seizure stopped.

It's hard to convey how much of a dilemma it was not knowing how long Awesome had been seizing.  And why that mattered so much.

Most seizures for most people last only a few minutes (1 to 3 minutes); the vast majority of seizures stop before the 5 minute mark.  Seizures that continue past the 5 minute mark are called status epilepticus seizures.  A status epilepticus seizure is a medical emergency because these seizures are at high risk for not stopping without medical intervention. 

Seizures are like the proverbial snow ball rolling down a hill, gathering momentum--mass and energy.  The longer a seizure is goes on, the harder it is to stop; the harder a seizure is to stop, the more and stronger drugs it takes to stop it.  In short, the force needed to stop a seizure--measured in drug quantity and drug strength) varies directly in relation to the length of time the seizure's been going on. 

If treatment is delayed for a status seizure, before you know it, you're behind the curve, struggling to catch up with a runaway seizure--a seizure that is always two steps ahead of the means (graded by the increasing strength and quantity of the drugs) you're using to attempt to stop it. 

And so it's important to try to stop a seizure as quickly as possible after the 5 minute mark--when stopping it is easier.

If Awesome was already in the midst of a status seizure, the longer we delayed using rescue drugs, the more likely it became that we were insuring an acute seizure crisis of the kind that our doctor has worried about from the beginning.  A crisis where she ends up not only in the ER, but also in the Pediatric Intensive Care Unit (the PICU).

On the other hand, if this wasn't a status seizure--if her seizure had started only a couple of minutes before we arrived on the scene--then using a rescue drug was unnecessary.  And it seemed a defeat after Awesome had gone a year without needing a rescue med, to have to use a rescue med.

Knowing what to do--or not do--during any particular seizure involves a calculation, a weighing a lot of things.  It's a calculation of sorts.  An individual calculation for that particular person at that particular time knowing their particular short- and also, long-term history.  It's a very important calculation; your seizing child's well-being depends on it.  And because it's so important, and it's taking place in midst of a crisis, making that calculation tends to be intense and scary-- and at the same time, it can feel very subjective and arbitrary.  It's easy to feel overwhelmed and like you will make a mistake.  Often you can feel like you have no idea how to weight what you know and what should trump what and what is reasonable or not reasonable.

Seizures are like dynamic snow-flakes.  Unique.  And often apt to surprise.  Each seizure can be known and comprehended only after it--and its post-ictal aftermath--is over.  Seizures are like wild animals, you can never necessarily trust them to be as you think they will be.  It's a mistake to trust that you know how it will behave in any situation.  And so you have to be strategic.  You have to think ahead.  To think through the what-if's.  What if the seizure doesn't behave as we think it will.  What is our recourse, our strategy?  In what time frame?   What if the first recourse--rescue--fails, what is the second recourse?  Are these recourses--these solutions--close at hand?  How long will each take to implement?  When should one go on to the next levels of rescue, and so on....

I will spare you the details of all our calculations, made desperately and yet calmly too (it's an art that one learns over time) as Awesome seized.  We tried to do the incredibly difficult risk-benefit, fear-bravery, err on the side of safety--take a leap of faith, fail-safe calculations involved in deciding whether we should or shouldn't administer Awesome's emergency rescue drug, Diastat, even as we dealt with the crisis of Awesome's seizure.  And with the idea of possible injuries.

And meanwhile we were aware of the guilt-inducing fact that we had forced ourselves into this situation of having to do make these difficult judgments only because we'd failed to supervise Awesome for 36 minutes.   It's not a crime to fail to supervise a13 year old in the safety of your own home for half an hour.  But it is unwise--even foolish--when your 13 year old has intractable epilepsy and a very strong history of status epilepticus.  And we--both she and we--were paying the price for our foolishness.

David favored waiting 5 minutes to see if she'd stop seizing on her own.  I couldn't stop worrying that every minute that went by was putting us further and further behind.  If we waited 5 minutes to administer Diastat, we'd then have to wait 10 more minutes to see if it worked to stop the seizure.  If it didn't work at the end of those 10 minutes, then we'd have to call 911.  And then after calling 911, it would take another 10 minutes for the ambulance to get here.   That's 5 min + 10 min +10 min. = 25 MORE minutes before the EMT's could be in position to attempt to start an IV of antiepileptic drugs if they were needed.  By waiting 5 minutes to give Diastat, we'd be committing ourselves to a potential 25 minutes of seizing if our Diastat didn't work.   The more math I did in my head, the scarier the scenario of waiting to administer Diastat seemed.  The possibility of permanent damage starts at about the 30 minute mark.  That gave us a grace period of only 5 minutes.  If Awesome had already been seizing for 5 minutes by the time we'd found her, then we'd already be to the 30 minute mark before help could arrive.

And in my head I worried about additional complications--like the fact that the EMT's would probably first administer a drug that we knew from experience didn't work for Awesome.  They'd want to wait for that to fail before trying another one.  I could imagine one failure after another, each adding more and more time to the time she'd been seizing, and reducing the likelihood that each subsequent anticonvulsant they tried would work.   How would they ever catch up to the runaway seizure? The gamble of waiting to give Diastat made less and less sense to me.  And I found myself becoming more and more fearful.   I wanted to err on the side of safety.   To nip this seizure in the bud while it was still young enough to be stopped with the rescue med we had.   I wanted Awesome to be OK.  I didn't want to be dealing a major acute seizure crisis.  No ER.  No PICU.

Finally logic and emotion teamed up--or maybe logic simply gave way to emotion.  At any rate, I soon found myself saying over and over again, variations of "David, I really think we should give her Diastat!" Initially he wanted to wait, but as the seconds turned to minutes, he too gave in.  And erred on the side of caution.  And so I administered the Diastat.  It worked within a minute.  The seizure was over.  So too was our year long streak of not using Diastat.  Just like that.  The record rescue-drug-free run was broken.  The Diastat clock reset.

Awesome slept for 10 minutes after the seizure ended.  While she slept, we examined her for physical injuries.  The only thing of significance we found was a medium-sized goose egg on her forehead  just above her left eye.   At first I worried about a concussion as she wafted in and out of sleep, attempting to talk before she was even remotely coherent.  But thankfully, again because of CBD, that initial incoherence was short-lived.  Soon Awesome was awake and speaking normally.  Making sense.  Not even the least bit language impaired--as she used to be in her post-ictal periods before CBD. 

As she recovered, Awesome assured us that nothing else on her body hurt.  Her arms and wrists on which she'd fallen were fine.  There were no signs of a concussion, and, aside from the goose-egg on her temple--which she insisted didn't bother her that much--her head didn't hurt.  Given everything, it was a miraculous and merciful grace that Awesome hadn't been seriously hurt.  (And later we'd also find out that Awesome's laptop was also unhurt, though she'd fallen on it directly, with her full weight, on a hard tile floor.)

Later Awesome also told us that the last thing she remembered before she lost consciousness and fell, was hearing her David say that it had been 36 minutes and that he should go check on her!

So in fact, somewhat ironically (given all the mental drama--and the guilt we felt), though we had left Awesome unsupervised for 36 minutes, it turned out that her seizure had started just seconds before David arrived on the scene.  If we had known what a short time she'd been seizing, we'd not have used Diastat; it had been totally unnecessary.  CBD had indeed been continuing to keep Awesome safe by keeping her seizure non-status, even as we were in a rough patch of our experimenting with CBD, making it more likely that her seizure would be longer than usual.  But we'd had no way to know any of this. Sitting there, trying to make the decision as to whether to use Diastat or not had been difficult. We'd made our judgment based on calculations involving all that we knew about Awesome's medical history, her current situation, and the amount of time rescue of various kinds takes.  In the end though, prudence won out.  The intense desire to avoid something terrible was the strongest factor of all.

As epilepsy parents, we are always learning.  And experiences like this--that evening in early November 2017--form the back-drop of how we decide what is reasonable and unreasonable.