It was around 11:30pm and in my dream there was this weird snorting noise. You know how, when real life noises pervade our dreams, we can make them just be a part of that dream? Well, that was and wasn't happening. I can remember that I kept trying to make that sound fit into my dream but I just couldn't.
Something was wrong. Even in my dream, I knew that.
So I woke up and still could hear that odd snorting noise. I lay there for maybe thirty seconds before it hit me that I did know what that noise was. Tessie made that noise sometimes during a seizure.
I sat up and looked at the heart/O2 monitor and her heart rate was 172.
"Charlie! Wake up!', I yelled as I ran to get the oxygen to give to Tessie.
We did the usual but it was really hard to decide when to give the emergency meds. After all, we had no idea when the seizure actually started. How long had my poor Toodle Bug laid there, all alone, thrashing in her bed, before her parents realized what was happening? Ugh, that question really, really haunts me.
At any rate, we did the best we could and after our timing of nine minutes she stopped. I knew right then that we had missed at least three to five minutes of the seizure because she almost always seizes for twelve minutes or more.
I comforted myself with the knowledge that at least I had woken up in time to help her and that it was over now and she was okay.
Or so I thought.
After about a minute and a half, she started seizing again. Hard. I gave more meds, the most I could safely give her without compromising her breathing, and waited.
She finally stopped again after about another nine minutes.
Charlie and I breathed a very shaky sigh of relief.
Then, after about forty seconds, she started seizing again.
What the hell was happening?
I knew we still had a small window of time before we had to get really scared so I waited. And it felt like I waited forever.
When we were nearing the twenty-five minute mark I told Charlie, "I'm scared. I'm calling Sheila. I know she is asleep and I don't care. I'm waking her up."
So I called Sheila, quickly brought her up to speed and told her Tess had had probably seven or more seizures in the past twenty-five minutes and was still continuing to go in and out of them. She promptly told me to either call 911 or get on the phone to the Complex Care physician at Children's. She was really pushing for me to call 911 though.
So naturally I opted to call Children's. It seemed so overly dramatic to call 911. Or perhaps I was just in total denial of how bad off Tess really was.
The doc very quickly told me to hang up and call 911 and tell them to take her to Children's (I know, hadn't a certain home health care nurse just told me that very thing?). They would be ready for her in the ER.
So I did the thing that I have managed to avoid for nine years. I called 911. It was a surreal experience. I felt like I was on a TV show. I made myself speak slowly and calmly, remembering from watching shows where people did call 911, how imperative it was to be in control so that they could quickly get the information needed to dispatch out the ambulance. (God, sometimes I really impress myself...or maybe I just watch way too much television. Whatever.) The operator asked me if I needed him to stay on the line until paramedics arrived. I said no, I could handle it until they got there. Plus, let's be honest, I was in my PJ's for pity sake and no way was I going to the hospital like that! I need to change, comb my hair and brush my teeth. Priorities people!!
The paramedics arrived very promptly complete with fire trucks. Lights were flashing and sirens were wailing and it was the middle of the damn night in a hotel full of people. And people do love to stare, don't they?
We had the door open so the paramedics could come right in and you know what?
Tess had finally stopped seizing. Naturally.
I apologized to the paramedics for causing such a fuss but they very quickly reassured me that they were extremely happy Tess had stopped but she was still going to the hospital because she had seized for about thirty minutes and if she started again, I couldn't help her. She would need drugs that would very likely compromise her breathing and thus needed to be in a place that could help her breathe if it came down to it.
Okey dokey then. Let's roll.
I climbed in the back of the ambulance while Charlie hopped in the van to meet us there. They got Tessie all settled and did her vitals then we hit the road. They turned on the lights and even whooped the siren a few times. And I must confess, that part was sort of cool.
I know, I know....pathetic.
This isn't actually a photo from this past adventure. Just think of it as a replay.
She has had may med changes in the hopes of getting some control over those stupid seizures. It has been about 11 days since that night and since she has had a seizure. Are the meds working? Maybe. God knows I hope so.
Tessie feels my pain. Or at least pretends to. Or maybe she is lamenting the fact she got stuck with such a crazy mom. It's anyone's guess really.
But I have to say, I am scared to be out here on this island, and most likely home alone when she does have another seizure. The what if's are bouncing around my brain like ping pong balls. Plus, let's face it, another winter is coming and I can't help feeling like we are tempting fate by trying to keep a medically fragile child on this godforsaken island when bad weather does strike. Our options are few and the potential problems are many.
Oh well, no one ever said it would be easy. Worth it, for sure. But definitely not easy.