Status Update

Friday night, after a pleasant family trip to the mall (incuding Tigger), I had a strange urge to check the emergency bag I'd packed months ago for impromtu trips to the hospital. I don't know why, I just felt the need to make sure all was as it should be, just in case. iPhone chargers, ear phones, instant coffee, yoga pants and top, socks, Simon's yellow blankie (we have multiples), toothpaste and toothbrush for me and Simon, hairbrush and tie, tissues, notepad, pen. It was all there, but I did decide to add a few pull-ups for Simon since they never have them at the hospital. I zipped the bag and went to bed.

It has been a pleasantly busy summer so far. I've had lots of great projects to work on, the kids have thoroughly enjoyed their new babysitter and their inclusion summer camp, and we took a lovely trip to the beach just a few weeks ago. Most especially, this has been the summer of Tigger. Right away we came to love having him in our family. Getting to know him, getting he and Simon to bond, maintaining his training, and just adjusting to life as dog owners has been a big focus of our day-to-day over the past several weeks. (I promise a more in-depth Tigger post later this week).

Things had been going along smoothly until Friday night. About an hour after going to sleep I heard Brian calling for me from Simon's room and I immediately knew what was wrong. Brian had seen Simon suddenly sit up in bed on the video monitor (Brian is a night owl) and, when he went in to check on him he found that Simon had vomited and was in the beginning stages of a seizure. 

We waited the required five minutes, but the seizure did not stop on its own. We gave a new emergency med (nasal diastat), which slowed but did not stop the seizure, and then called an ambulance.

While waiting for the paramedics, Simon lay on the floor seizing with Brian and Tigger by his side (I ran out to drop Olivia off at a neighbors house and flag down the ambulance). Tigger sniffed Simon all over and stayed close, but as he is not yet specialty trained, he didn't know what to do. Since this was Tigger's first experience with a big seizure I have to assume that it was simply a good introductory learning experience. Sadly, the only way Tigger will get to know and recognize Simon's seizures is for Simon to have more seizures. Ugh.

As usual, the paramedics had to take us to the closest hospital, not our preferred hospital. Usually, this is a disaster, but (I can admit to being pretty pleased with myself) through really awesome preparation that I intend to make even more awesome, I was able to make it a successful trip. After our last status episode, which was quickly and successfully treated at Hopkins, I requested a list of the drugs and dosages that they used. I wanted to have a record of what they did since they were able to stop the seizure without causing a coma (not being in a coma is a really good thing). I took a photo of that list (signed by our neuro for authenticity's sake) and keep a copy in my phone so I ALWAYS have it with me. I was able to show the list to the ER doctor and insist we follow it to the letter.

I did have a bit of a squabble with the doc about this. Apparently, the meds we used aren't typical protocol for a status seizure (a medically induced phenobarbital coma is actually the protocol), and the med that I really wanted was not immediately available. I was polite, but I had to be quite firm and more than a little pushy (I believe I asked the doc how many status seizures she had seen and then pointed out that I was a lot more experienced in this particular area...). Nonetheless, it still took a half hour to simply get the medicine we needed for Simon from their pharmacy to the ER. But, once we had it and loaded Simon with it -- the seizure stopped. Two and half hours after it started.

Despite the fact that we'd stopped the seizure, the hospital still transferred us to Hopkins (they seriously can't wait to get rid of us, it is almost comical). During the ambulance ride to the second hospital I mentally braced myself for Simon's usual (warranted) terrified post-ictal state, when he'd wake in a few hours to find himself in the hospital attached to so many wires and tubes and machines. Compounded by the misery of being stuck there for at least the next 24 hours. 

Simon started to wake up (and freak out) almost as soon as we were in the ER at Hopkins. After we got him settled and he finally fell back to sleep, the doctor pulled me aside into a private room. There, she confessed that she has a 10 year old autistic son. She told me that she understood some of what we were going through personally and she knew that, in my shoes, all she would want would be to take her boy home so he could really rest as soon as possible. "You look like you know what you are doing," she said, "is that what you want, too?" 

My eyes filled with tears and I nodded hard. To avoid a hospital stay would absolutely be best for Simon and I absolutely did know what I was doing. She asked us to stay for another hour so she could watch him, and she made me promise to bring him back at the slightest sign of trouble, but she went ahead and got our discharge ready so we could leave right away.

As we left, I thanked her profusely and noticed that she, too, had tears in her eyes. "I can't take it away," she said, "for either of us. But if I can make it just a little bit easier, than that is what I am happy to do." 

Tigger stayed by Simon while we were in the ER...

and he held Simon's hand on the way home...

and watched over him while he recovered.