Friday, June 16, 2017

A Year Later

Last June was---well... it was one of many hellish months we experienced in 2016. Seizures were so out of control there were four 911 calls and trips to the Emergency Room, several inpatient stays and one trip following a fall to stitch a head wound caused by a fall during a brief but violent seizure.

The trauma /excitement didn't end in June. There was the intubation and ICU stay in August and another 911 call and emergency transport in October. We all agreed that the October trip was more a result of our probable PTSD versus the severity and length of the seizure. We, quite simply, were frayed and fried and for a few moments, not our usual competent, caregiving selves.

I don't know if we had another episode in us, frankly, after that October evening. The pace had been so frantic and the seizures so unrelenting since the previous November. Each time we rallied and I suppose we would have...I mean, there really isn't a choice is there? You just do what you have to do.

By the time we visited the Mayo Clinic in Arizona in December the frequency of daytime seizures had decreased significantly. In January we experienced multiple days in a row without seizures while awake; in February only one day with a seizure.. And now 18 weeks without a daytime tonic seizure save for a blip when meds were missed.

So as I said in my previous post---Here. We. Are.

Michael's taking golf lessons and going to the driving range. There's a date set to get back on that paddleboard he's missed so much. There's a request out to meet with his school counselor and talk about transferring his college credits so he can complete his degree on-line. There is discussion about securing an internship so he can get some experience working with sound or visual effects. And, we are weaning (very, very slowly) the last drug that was added to his regimen.

We still don't know for sure what set off the furious seizure spree. Nor do we know why they slowed and then stopped. It would be nice to have answers; but like so much of epilepsy and it's treatment modalities it's hunches and educated guesses, and anecdotal remembrances. Hit or miss.

Whatever the reason; we'll accept this gratefully. Our newest "normal".