Things have continued to go awry with our new seizure monitor.
On Friday when I put Ben down for his nap I looked at his monitor and thought about turning it on. I had been leaving it off for naps since we had been having so many false alarms and besides, as far as we knew, he had never had a seizure during a nap.
So, I left it off and then put myself down for a nap/rest/quiet time.
When Ben woke up a couple of hours later I went and got him out of his crib and noticed that he was very postictal. He was limp and making the familiar jerking and repetitive movements common after one of his seizures. My heart broke. I pictured my little guy alone in his crib working through a seizure while I lay just a few yards away totally unaware. Since Ben's communication is still pretty limited we aren't sure how conscious he is during a tonic clonic. Could he tell I wasn't there with him? Did he wonder why I didn't come? How long did it last? Was he face down in his pillow like he often is during a seizure in bed? If I had turned the monitor on would it have worked this time? I had to stop picturing the scene and wondering about all the questions buzzing through my mind.
He was safe and I was so very grateful.
Fast forward to Sunday afternoon. We had put Ben down for his nap...this time the monitor was on. I went downstairs to make some phone calls for my calling and Andy went to our bedroom for a nap. According to Andy, a little while later, he heard Ben cry out. Andy went in to make sure it wasn't a seizure. Ben was just fine but Andy decided to stay in the room with him anyway and tried to make himself comfortable on the floor. Ben went right back to sleep. A while later, Andy, who was still awake, noticed Ben start seizing. Like I had done, he waited to see if the alarm would go off. No such luck. The seizure was only about a minute but I was so glad Andy had been in the room with him.
I think a call to the company is in order. Hopefully they can give us some suggestions as to how to make it work. If not, I guess there are other options out there. A fellow Dravet blogger mom mentioned to me that they just use a pulse oximeter and that has worked very well for them. Also, on Pinterest just a few days ago I saw this...
...a nice little app to monitor breathing through a pulse oximeter "sock". Pretty nifty!
I just wonder if Ben would keep that sock on.