Verse of the Day!

Saturday, September 10, 2005

Hopelessness....... and then Hope

As I sit down to write this, I'm at somewhat of a loss for words. We’re home from the Baylor/Samford game. I spent most of the second half (until we left) wrestling with Evan as he told me I was worthless, as he tried to bite me, as he tried to punch me, and as he tried to scratch “my face off.” Then I wrestled him into the car, into the shower, and finally into bed. I don’t know how much longer I can deal with this. Everyday I think that today is the day we’re going to turn the corner and Evan will start to improve. As I sit here and type, I am once again praying that tomorrow will be that day.

To get everyone caught up…

Evan was a trooper at the hospital. He endured the “glue” to hold the electrodes on his head. He was tethered to monitoring equipment and had to stay in one room, but he didn’t complain. He liked the food and the fact that there was a lot of it. Ice cream was readily available. He impressed all the nurses and technicians with his smarts. They, of course, fell in love with him, as he was being the sweet Evan that we all know and love. While this was all going on, however, he was having multiple “spikes” in his EEG. I don’t know if those are considered “seizures” or not anymore, as they only last 5-10 seconds. I just know they are abnormal and they happen WAY too often. The low was 6 per hour, but it was as high as 15.

Dr. R wanted me to come up to Dallas so he could talk to both Regina and me. So, Meme was nice enough to go up there with Drew, Lindsay, and me so that we could talk while she watched the kids. I had planned on swapping with Regina and staying the night. However, Dr. R said that he had seen enough and staying another night- regardless of what he saw- would not change our course of action. Basically, Dr. R thinks that Evan’s brain can only handle so much of the seizure activity and at some point he starts acting the way he does. So, we need to control the spikes. To try to do this, we are going to add another medication- Zorantin- to the Depakote ER.

I honestly don’t know what to think anymore. As Regina and I talked I thought of several different things. Here they are in some random, non-coherent order-

•The seizures (at least the outwardly evident ones) are better with the Depakote. We have gone longer periods without a major seizure

•We hope that he will outgrow these seizures. If/ when he does, they won’t suddenly stop. They will gradually drop off. So, maybe now we’re in the “buildup” phase. If he weren’t taking Depakote, maybe he would be having 30, 40, 50, or more per hour.

•It’s very frustrating, because it’s such an inexact science. It’s not as simple as antibiotics for an infection. There are multiple types of seizures and multiple ways that people exhibit them and multiple medications to treat them.

•I don’t know if the new medicine is going to work. At this point, I say give me the seizures, I just want my old Evan back.

•Friday night when Evan was being so sweet, Regina asked him why he couldn’t be like that all the time. He said he wasn’t going to act crazy in public. He blew that at lunch today right after we left the hospital and again at the game tonight.

Wow, that was a long post considering it started out saying I was at a loss for words. And it probably didn’t make sense. And doesn’t even scratch the surface of all that’s going through my mind. But it felt good to get it out there.

Pray for healing in Evan’s brain and patience for the whole family as we adjust to Evan’s ever-changing temperament.

edit: I'm sure Regina will add much greater clarity and detail to this later. Also, I hadn't looked at the verse for the day until I posted, but it seems appropriate-

“ I lift up my eyes to the hills— where does my help come from? My help comes from the LORD, the Maker of heaven and earth. ” (Psalm 121:1-2)

My hope also comes from the Lord!!


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