"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Saturday, April 16, 2011

April 16, 2011

While Benjamin continues to have seizures, he was discharged late yesterday afternoon. The official EEG results were devastating. Ryan was working so I was the only one in the room when his doctor came in at the end of the day to discuss them with me. I was told that between seizures, Benjamin's "background activity" is extremely disorganized with no recognizable pattern. What's most concerning is that the "disorganization" has evolved from his last EEG which was about 2 weeks ago. Right now they're diagnosing him as having general epilepsy, but his primary neuro doctor is worried that he may develop a condition called hypsarrhythmia. I asked her what this meant, and she said the seizures will most likely escalate. She said Benjamin will always need to be on a moderate to heavy dose of multiple seizure meds. She said the goal is for him not to be so medicated that he's "not Benjamin anymore." I had him sleeping so peacefully in my arms and I just looked at him and broke down. I told her that I know he's not going to be perfect, but I want him to have a good quality of life. Ryan arrived shortly after (in time for the next round of neuro doctors to come in) and got the same story. I started crying again and all I could say to them was "hasn't this poor little boy been through enough?" I really thought having gone through what we went through a year ago, I would get used to these bombshells being dropped on us, but I'm not. Maybe I've been living in denial for a bit. Who knows. But all of a sudden this is very real and unbelievably scary. Ryan and I are finding ourselves asking the same questions we asked a year ago... Why is this happening to us? Why can't Benjamin catch a break?

Thursday, April 14, 2011

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.

Wednesday, April 13, 2011

April 13, 2011

Benjamin's managed to ward off a hospital stay for almost 7 months and I'm so proud of him for that! But here I am, typing from the Neurology ward at Children's 9NW. The episodes Benjamin's been experiencing are in fact seizures and they've been escalating since my last post. This has been one of my biggest fears. He started on the Keppra about two weeks ago and he's been nothing but a mess. One of the side effects to the medication is "hostility" and boy has he been irritable! We could have handled the irritabilty, but the continuation of the seizures has driven us crazy. We've gone up twice on the Keppra with no improvement whatsoever.

I had a gut feeling yesterday wasn't going to be a good day. Benjamin had two short seizures even before his OT session at 10am. During OT, he had another one that lasted about one minute (it doesn't seem like a long time, but when you're living it, it's an eternity). Needless to say, we ended OT early, I took him home and called the neurologist. Her recommendation was to give him an extra bolus of the Keppra and increase his regular dosage going forward. A few hours later he had another seizure and his face was turning blue. He came out of it briefly and then seized again. I called 911, the ambulance took us to South Shore where we stayed for a few hours. In the ER we saw our two favorite RTs and I was so grateful! There's nothing like seeing a familiar and caring face when you're in a not so great place. A few hours later, the docs loaded him up with Phenobarbital and we were en route to Children's. Once we got here they gave him another huge dose of Phenobarbital and he was pretty much done for the night.

We were a little worried this morning because he was like a little rag doll; unbelievably floppy. We were so afraid this was what he was going to be like going forward, but we were put at ease when neurology rounded this morning and told us they slammed him with the drugs and he would normalize after a few days. They said he would basically feel drunk for two days.

He's hooked up to the EEG through tomorrow to make sure the other unusual behavior he's exhibiting all the time (the head turning and eye fluttering) isn't a seizure as well. We know the mouth drooping and lip smacking is definitely seizure activity, but we're hoping this other stuff is just Benjamin being quirky!

We're keeping our fingers crossed that he remains seizure free tonight and we can go home tomorrow. Although the nurses and doctors have been wonderful, I don't like sleeping here and I miss Jadyn.

She was home with me and my mom yesterday when I had to call 911. I was afraid she could sense my panic and was going to get all upset, but I should have realized that wasn't going to be the case. She was her usual self, and was entranced with the commotion. As I was running around the house trying to gather what I would need for the hospital this little voice ws right behind me telling me I had better move it because the guys in the ambulance were waiting for me!