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Yesterday, the day after celebrating our son’s birthday—eleven years and one day after riding in an ambulance through an ice storm to Maine Medical Center to undergo an emergency c-section six weeks before Calvin's due date—we found ourselves back in an ambulance, Calvin having suffered a series of difficult to control seizures called status epilepticus. We spent twelve hours there.

Status epilepticus is dangerous, because the longer a single seizure or series of seizures lasts the harder it is to stop them, and the patient risks a swollen brain and/or the shutting down of vital organs. At five a.m., after his third seizure at home and having given him extra cannabis oil after the first one, we gave Calvin rescue Diastat, aka rectal Valium. Rather than putting him to sleep it made him catatonic and we weren’t sure if it had stopped the seizure, so we resigned ourselves to call 911. It had been nearly eight years since the last time we’d had to, back when ambulances idling in front of our home were, regrettably, not uncommon.

Still dark and quiet outside, and as Michael carried our boy out to the ambulance through the falling snow, I gathered some of Calvin’s medicines, the cell phone, my jacket and hat. No time to brush my teeth, drink my coffee, put on underwear, feed the dog or let her out to pee. When I stepped inside, the back of the transport felt all too familiar with the exception that this time I was weeping over a growing boy rather than an infant or toddler. Still, the worry is the same, perhaps worse because this little person has woven his way into me like a bur in a blanket which, if plucked out, my life would no doubt unravel.

At the hosptial we were met by a young female doctor named Teri. We told her of Calvin’s history with seizures and she mentioned having a daughter with epilepsy. I could hardly believe it. In all these years of countless specialists, we have never had one to care for our son who knows, first hand, what it’s like to live with epilepsy. Teri was compassionate and kind, patient and empathetic. I knew we were in good hands, and when her shift ended, her husband Ranjiv, another ER doctor, replaced her. Both of them deferred to our better judgement as Calvin’s parents. Both of them spent considerable time talking with us and helping us make each painstaking decision because, to a great degree, both of them knew what it was like to be us.

For hours, as Calvin went in and out of what we think were complex partial seizures, some brief, others prolonged and with symptoms we'd never before witnessed such as strange growls and intense startle-responses, we discussed emergency meds. We first opted to try a dose of nasal Versed, a short-acting benzodiazepine, which made him sputter and cry and which didn’t seem to do much to stave off the serial of seizures. We watched and waited as Calvin seized then slept, seized then slept. Between fits I managed to give Calvin his noontime seizure meds and a late dose of his morning cannabis oils, but still the seizures stealthily and regularly pummeled him for hours.

Finally, after tries from three separate nurses, one of them successfully set an IV so we were able to give Calvin a bolus of fosphenytoin, however the seizures, though they calmed, did not relent. The sleep-seizure pattern repeated until four o’clock when we finally decided to try a second dose of Diastat with the hopes of returning home to monitor him rather than transferring to Maine Med which we were loathe to do. As I sunk my head into Calvin's neck while he slept, the sickeningly sweet smell of Valium seemed to seep through his pores and I realized, if he were to expire, I'd even miss his smell.

The last dose of Diastat, plus being hydrated after hours without fluids, seemed to stabilize Calvin's condition enough for us to take him home. Before leaving the ER we hypothesized with Ranjiv about why this was occurring. Was it an oncoming illness? Was it the smaller dose of clobazam? Was it sleep deprivation caused from the five straight days waking up around 3:15 a.m. and not going back to sleep? Was it that we hadn't increased Calvin's Keppra to account for his weight gain? Was it the cannabis? Is it that he is in the beginning stages of puberty? What my gut tells me is that we got a little bit greedy with the benzodiazepine wean and simply went too fast, reducing his remaining dose by twenty percent in the course of only three-and-a-half weeks. Or maybe it was just a perfect storm of everything.

Calvin is better today, though still a bit punch-drunk, so I remain on edge, never sure when the next jab or hook might send us to the ropes.

photo by Michael Kolster