It isn't always what it seems to be on the surface.
When Mrs. Phish went into the hospital last Monday, we were all pretty certain we knew what to expect. Kick her off all of her epilepsy drugs, wait for a seizure event or two, record them on EEG and then map the focus in preparation for surgery. And to be sure, Monday itself was a quiet day. We started to think it would be a long week.
Tuesday morning came around and still no events. I went home for a bit, our daughter taking over bedside responsibilities (namely pushing a button if a seizure presented) for a little while. During this time the first seizure came and it was a strong one. Shortly thereafter another rather intense seizure came on and I was right back to the hospital. We started to imagine a shorter week -- maybe they'd gotten enough data to wrap the week early?
But over the next several hours seizures continued. It was a rough stretch for Mrs. Phish, no doubt.
The decision was made to start up her medications again, which seemed like a good thing to us. We felt confident that the worst was behind us. We heard about others who tested all week but never recorded a seizure, requiring another session down the road. Things were looking up.
Mrs. Phish was painting some koi at 8:55 when she seized again, falling back into the bed as usual. But this time was very different. As I started talking to her, trying to coax her back as I had done a thousand times, the door of her room burst open with a sudden BANG! In a flash there were a dozen medical personnel in the room frantically shouting.
They threw her table across the room and dropped her bed flat in seconds. Alarms were sounding and I heard the intercom calling code blue. Paddles were wheeled in, voices were pitched, the pressure was palpable. This was no ordinary seizure.
I kept talking to Mrs. Phish and, dependable as sunrise, she came around -- groggy and uncertain what was happening. The room settled as it became clear that she was stabilizing, though the intensity of the moment lingered on in the air.
Her heart stopped initially for 4.5 seconds, beat once, and then stopped again for 16 seconds - this time switching off the brain. She flatlined. Hence the code blue and all that went with it.
She was given a bus load of meds to cease all seizure activity, which knocked her out for the rest of the night. At around 11:00 PM her neurologist called me and asked if this was, to my eyes, her regular seizure. I said yes, this one looked like a typical event. He explained that her seizures stop her heart, and that this is what has been going on for years.
32 years, to be exact.
And in all that time, with hundreds of seizures that sent her to the floor unconscious, her heart was stopping every time. It is a very rare situation and unbelievably serious. That her heart started after every single event (sometimes without the brain online yet), that she didn't have a stroke or a heart attack, is nothing short of miraculous.
The next day her medical team made arrangements for a pacemaker to be placed. That condition is too dangerous for even one more event like the one she suffered last Tuesday night.
The neuro test was aborted, and all thought about surgery was more or less shelved for now. Her neurologists came up with a new prescription approach that, so far, is working well with no side effects -- a little breakthrough that holds real promise.
We were in the hospital all week, but emerged with new understanding and newer solutions. Since her release it's been smooth sailing, if pretty sore where her pacemaker was placed. We have some new perspective though, and I must say that moments like these are good at divining what is truly important.
I cannot tell you how wild last week was. But it was also revealing and helpful. Certainly grounding.
Hug your loved ones and try to appreciate the fragility and speed of this ride. We're lucky to have one another for a bit, and that's about the best of it.
Onward and upward.
Once in a while you get shown the light, in the strangest of places if you look at it right
Reply With Quote
Originally Posted by RenoZag
