Sunday, November 6, 2011

Heart songs and heart strings

I'll open this blog with a photo I shot this afternoon. We had such lovely weather. Nate, Luke and Matt were out in the yard, picking weeds and shoveling dirt around. Will and I hung out together on the porch. At one point, Luke came up to visit and see how we were all doing.

This was the high point of the weekend for us! It started off kind of rough. Nate called me on Friday afternoon and joked if I wanted to go out that night. I just kind of chuckled, we thought we were in for a slow night and a weekend of doing things around the house.

We settled in to watch some DVR'd shows after all the boys went to bed. I got up to get some water, and checked on Will. He has had a bit of a cough over the past week, so I had heard a cough and wanted to see if he was ok. Unfortunately he wasn't. He was in the early stages of a seizure.

Within the past couple of days, we have completely weaned Will off of Keppra. He's almost up to his final dosage on the Lamactil. Between the drug changes and the cough, it was impossible to tell what had caused Will's seizure. Thankfully he was in the early stages. The seizure ended and he went back to sleep within a couple of minutes of getting the emergency seizure medication. He slept peacefully next to me out the couch as we settled back into our DVR'd shows. This is kind of normal for us, I guess.

Something in me said not to leave Will alone, though he seemed to be sleeping completely normally. We tucked him back into bed, and I snuggled in with him. A couple of hours later, I awoke just as Will was going into another seizure. Having a second seizure like this is unusual for him, especially since the emergency medication would have still been in his system. We gave him a second dosage, which he subsequently threw up.

Because it was all pretty abnormal, we decided that he should go to the ER. Just to check things out. They ran labs, called the neurologist at UNC, and Will didn't have another seizure. After a couple of hours, Nate and Will were released.

We had used up the remainder of Will's emergency seizure medication, and because of the way the night had gone, didn't want to be without any. There is one 24-hour pharmacy about 15 miles from our house. The ER called in the prescription and Nate and Will made their way, arriving right around 3am. As they rolled up to the window, the pharmacist greeted them and asked if they could come back in 30 minutes.

Is that a joke? Seriously?

Unfortunately, the pharmacy's databases and computers automatically reboot themselves every night at 3am. There was no way the pharmacist could give them the medication. Nate and Will drove around for a half an hour before getting the medicine and heading home.

We all spent most of Saturday recovering. Will seemed to be doing well, and Nate took a nap while the rest of us watched Mickey Mouse Clubhouse. Today everyone seemed to be doing much better.

Will steps up to the final dosage of Lamactil tomorrow. Just like before, though, this is all wait and see... see if the Lamactil does the trick. If it doesn't, I don't know exactly what we do next. At some point we run out of medications to try. I don't think anyone wants to resign themselves to the fact that Will could have a seizure once a month, regardless of which medication he is on... but it could come to that.

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