Four years ago today, when Calvin was just two, he was in the hospital after having been there for several days. He had been admitted to the Pediatric Intensive Care Unit after having had a series of seizures. He stabilized and was moved to the main pediatric wing. The morning of the third day I was lying in the hospital bed with him after having given him his meds. He seemed to be zoning out and I could feel the rapid heartbeat in his tiny chest. I kept calling in the nurse and the young resident physicians telling them that something was wrong, that Calvin wasn't himself and that I was concerned it might be a seizure, although I hadn't seen anything like it before. I pointed out the faint, rhythmic twitching of his lips. The medical experts were flummoxed.
I called them in a second, a third and a fourth time when the waves of rapid heartbeat and twitching returned. Still they were confounded. One doctor performed what is called a sternal rub, grinding his knuckles into Calvin's delicate sternum to see if he would respond, to which Calvin only slightly recoiled and remained semi-responsive. And while I was quite distraught the doc was still uncertain if Calvin was seizeing and thus continued on his rounds.
I pleaded for the on-call neurologist but he never appeared. This dreadful cycle continued for four agonizing hours until it culminated into a full-blown convulsive seizure. The first two doses of rectal Diastat (Valium) and a subsequent dose of Atavan failed to stop it.
Luckily, when Calvin had been admitted to the main wing I had insisted, as a cautionary measure, that they give him an IV even though he seemed stable. I had explained that Calvin was a very "hard stick"; his low muscle tone made it difficult even for the very best technicians to find a vein. I had learned an important lesson once when Calvin suffered a 45 minute seizure due, in part, to the fact that it took the doctor 20 minutes to find his vein and administer the emergency medication.
This time, thankfully, a bolus of Fosphenytoin was easily fed into the IV and Calvin's seizure activity finally stopped after nearly four and a half hours.
One thing that's so hard in reading this is knowing that doctors could look back someday on this horrific seizure and matter-of-factly observe that such-and such was probably causing Calvin's seizure, whereas today they know so little. I wonder if neurologists who treat others who have seizures like Calvin's often feel kind of clueless/helpless.
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