Long, long day today, but I think we might have made some progress.
It didn't start out so hot. I went down to one of our little coffee shops to get Jer and I some breakfast-- one that we visit pretty often and so are fairly well known at. I'd been in the day before and so they knew Connor was having some issues, and they asked about him. One of the customers in the store chimed in.
"Your son has seizures that make him stop breathing? My nephew has those too!"
"Wow," I said. "That's kind of a crazy coincidence. Connor's seizures are really rare, so we almost never hear about anybody else with his type."
"Yeah," the guy said, "they sound just like his. How old is your son?"
"Four," I replied. "How old is your nephew?"
"Oh he died two years ago."
Yeah, that's right. He died. Two years ago. From the seizures.
Well, that just made me feel a whole lot better, right there. Just what I needed to hear. What a pick-me-up of a conversation.
Anyway, so I went home, and Joanna and Jake came over around 11:00 to watch Connor and work on the deck, respectively. Jer, Jake and I had only been outside for about twenty minutes when Joanna yelled through the screen door that Connor was having a seizure. This one didn't last very long-- only about twenty seconds-- but there was no way I was going to wait until Monday to talk to a neurologist. I called the hospital and had the neuro on-call paged.
He got back in touch with us in about ten minutes, took down all our information, and told us he'd review Connor's files and get back in touch with us as soon as possible. Once he called back, he didn't waste any time helping us put together a game plan! The first thing we needed to do was get these seizures stopped, so he called in a prescription for a few low doses of Ativan to our local pharmacy and told us to go ahead and give Connor one dose now and another if he had any more breakthrough seizures. Then he asked us to go into our local emergency room and get a blood level of Connor's latest seizure medication, Tegretol, drawn to see whether or not Connor was getting what they call a "therapeutic dosage," i.e. a level that fell within the desired range to stop the seizures. If Connor's body was metabolizing the medication in a weird way, then the levels might not be high enough to stop the seizures and that might be the reason why it wasn't working. If he was getting enough Tegretol but still having these seizures, then it would mean that the medication had failed and we should try a different one. Once we got the blood levels back (which would probably happen tomorrow) we could give him a call and figure out where to go from there.
He wanted the blood levels drawn at about 5:00 pm because this is when Connor would have the smallest amount of drug in his system. It was about 12:30 in the afternoon when we got off the phone with him. I ran down to the pharmacy and grabbed the Ativan, which we gave Connor as soon as I got home. Then we started getting ready to go down to the ER. We figured that if we needed a blood draw at five, we needed to get there at least three hours early because we'd probably be at the very bottom of the queue for treatment, since Connor (thankfully) wasn't actively seizing, experiencing acute trauma, etc. The last thing we wanted to do was march in half an hour before he needed his blood drawn to a busy ER and demand to be seen before everyone else waiting because we had a time limit. So we drove down there around 2:00, forgetting in the process two things.
The first was that this was our local private community hospital and not a giant state hospital, so the emergency room wasn't as likely to be crowded. The second was that when you bring in a sedated (the Ativan knocks Connor for a loop) four year old, plop down a six-page list of medical conditions and say the phrase "resuscitated three times yesterday" medical personnel tend to take note. We had a bed in the back in ten minutes and the doctor saw us five minutes later. Whoops.
So we spent about three hours hanging out in our nice little (private!) room, with the nurses popping in occasionally to make sure we didn't need anything and to coo over Connor, who as usual quickly won the affections of every female person in the vicinity due to his overwhelming aura of cuteness. Once 5:00 rolled around they drew Connor's blood, and while unfortunately it took three sticks (and the last one was right at the base of his palm-- not a pleasant place to have blood drawn from) he was an extremely brave little boy; he didn't even cry for the first two pokes! They ran his levels and gave us the results ten minutes later-- how's that for amazingly fast service?
So it turns out that Connor's Tegretol wasn't too low. It was actually too high-- and by a pretty substantial number. Keep in mind that this medication was drawn when Connor's seizure medication blood level would be at its lowest point for the day, and you can see that this was a big problem. Even though we'd originally planned to call the neurologist back the next day, the ER doc asked us to hold Connor's evening dose of Tegretol and call the neuro back immediately to figure out what he wanted to do. Then he printed out a copy of the levels for us, had us sign a single piece of paper, and we walked out of the emergency room twenty minutes after the blood draw was done. Least traumatic ER visit ever.
So we called and had the neurologist paged on the way home, and he called back shortly after we walked back in the door. After hearing the results, he told us that there was no doubt then that the Tegretol was failing to do its job, and not to give the little guy any more. Then tomorrow we're to switch straight back to giving Connor Trileptal, which is what he was on before the Tegretol. One seizure a week, which is what he was having on the Trileptal, is a heck of a lot better than three a day. Hopefully that medication change will tide us over until Monday, when they'll put together a new game plan for how to proceed. We're supposed to call and update the neurologist on-call tomorrow to let him know how things are going.
So in conclusion, progress is being made, which is a very good thing. But it was a long, long day and I'm sort of glad it's over.
5 days ago