Gone Awry

Yesterday I was actually looking forward to Michael's admission to the Epilepsy Unit at UCSD today. We were eager to break the seizure cycle of ten to twenty- plus tonic seizures during the waking hours which can knock Michael off his feet and into a myriad of objects which could hurt. He was tired of our presence to prevent harm, we were tired of seeing our son seizing so much, especially after having such a great year free of daytime seizures.

Yesterday wasn't a great day. Several tonic episodes in the morning but no harm---- we were there.  Sleeping most of the rest of the day because of a restless night with reportedly little sleep. Michael perked up during dinner noting that my meatloaf wasn't so great (he was right) and that he might want more (of something else) to eat later. He was engaged during The Voice and then Grammie's boyfriend Stephen Colbert's show. Actually, he was more alert than he'd been all day. Barry took him upstairs to complete his nighttime routine and ensured he was tucked in with Katie by his side.

Barry hadn't even made it to his chair when we heard a thud upstairs. Barry,  Meaghan and I raced to find Michael face down on the bathroom tile in the throes of a tonic seizure. I turned his head and cradled it on my lap and swiped his chest with the VNS magnet once, then in another twenty seconds again, then again. No spacing in between now ---- constant seizing motion. Lorazepam. Nothing. It was  clearly over five minutes. We have to call 911. Meaghan called and within minutes the familiar faces of Fire- Rescue Station # 24 were crowding the bathroom and hallway. The questions: how long? What did you give? Gently they eased us out and took over. Nasal Versed. Nothing. Strapped him in a transport chair still seizing. Transferred to a stretcher-still seizing. I said I wanted to go in the ambulance, quickly threw on some jeans and a top, raced outside and got in the front seat. When I turned around I could see the back of Michael's head rhythmically going back and forth . "Still?", I asked at least four different times. They were trying, they assured me. Finally a paramedic, Tim I think, stuck his head in the opening between the front seat and back treatment area. " Do you know how much Versed he had the last time--- we've given him a lot". Then eyeing the road ahead , " we're almost there".

I  hopped out of the ambulance and watched as the paramedics wheeled my still seizing son into an
Emergency Department room where he was met by the ER Attending , a number of nurses and other staff. Barry entered within minutes. They questioned us about history, administered Ativan twice , maybe three times, as we estimated the length of the seizure at this point to be approaching 45 minutes. Vital signs weren't great: racing pulse, high blood pressure , elevated blood sugar. The Attending said something about intubation which made me extraordinarily  scared and temporarily speechless as visions of a comatose, intubated Michael flooded my head. Nooooooooo, I screeched silently.I found my tongue when I heard Barry's desperate voice, "whatever it takes". I said I wasn't prepared to consent to that just as the Neurology Attending, a bespectacled 16 year old (actually 26) walked into the room and coolly and calmly took charge ordering a bolus of Dilantin with a new fancy name (better to sell the old, old drug) and getting Michael to respond to commands even while still seizing. Gradually, the seizure activity decreased then mercifully, stopped. Needless to say Michael was very drugged up, snoring loudly and requiring an occasional thump on the shoulder blade and reminder to breathe! Following a CT scan the team decided a night in the ICU where he could be more closely monitored, was warranted. At this point Barry and I felt comfortable enough with the competence and caring of the ER, Neurology and ICU staff that he drove me home for a few hours of sleep before he returned to the hospital to sit at Michael's bedside in the ICU.

When I walked in the house at 1 AM my mother met me in the kitchen. I caught her up with the night's events and sent her to bed with an admonition to get some rest - I assured her I was confident Michael was in good hands. I opened the door to Meaghan's room and was met by a stare from Michael's assistance dog Katie. Meaghan allowed her to sleep beside her feeling it might allay some of Katie's angst about being away from her guy. I think Meaghan derived a bit of comfort herself. I told Meaghan my plan to sleep a few hours and return for the day shift.

A little before 7 AM , I marched into the hospital with a duffle bag of clothes, Michael's meds and per his epileptologists request, his CBD oil packed in ice (more on that later). Barry's briefing was quick. Michael had and was, sleeping peacefully. I continued to be impressed with the professionals we encountered- the ICU nurse, another Neurology Attending, the Neurology Fellow specializing in epilepsy and the RN epilepsy coordinator who was dashing around to get us out of the ICU and into the Epilepsy Unit.
I was pretty amazed at all that had transpired in less than twelve hours.

I'm a little tired now. This will have to be a two parter. Until tomorrow , know that the CT scan was fine, Michael's day was extremely peaceful and seizure free, doctors were remarkably open-minded, and given the raw fear and impending dread of just a few hours ago, all in all it was a better day.  Hoping again for a better tomorrow and then some.

Sweet dreams Michael.