April 14, 2011

Well, we're still at Children's. We got some pretty devastating news late this afternoon. Benjamin's discharge papers were getting filled out when the neuro docs rounded and put the kibosh on it. We learned that the "quirky" behavior I was referring to in my last post (the head turning and eye fluttering) showed up as seizures on the EEG. I wouldn't be so upset if he did this only a few times a day; however, these seizures are almost constant and the phenobarbital hasn't had an effect on them. If I actually counted them, there's a possibility he could have them more than 100 times a day. We were told it can take kids a few minutes to even hours to recover from a seizure. The larger ones really tire Benjamin out. These smaller ones don't seem to take much out of him, but if he has them every 5 or 10 minutes and it takes him a few minutes to get over them, this isn't good. It's definitely a distraction for him and will hamper his development and progress. He's getting an even larger dose of phenobarbital so we'll see how his day is tomorrow. I feel like this poor little baby can't catch a break. He even broke out in hives from the solution used to take the EEG probes off his head! Please keep our little man in your thoughts and prayers. I'm confident we'll get through this. No matter how much I want to be home, it's good we're here. It's going to get better. If I keep saying that over and over maybe it'll come true.