just couldn't stay away

We went in for Round #2 in the PICU at Ruby this week. Tuesday morning Ted had a seizure. Not the "fall over on the floor and seize" kind of seizure that Sophie had last year. The kind where he stared off into nowhere and there was nothing in his eyes. It was crazy and terrifying and puts sad pictures in my mind. It started that he was moving but not seeing and responding, and then moved to complete nothingness. By the time I got him in the van, the seat belt was the only thing holding him up.

I took him to the ER and they gave him several IV meds to stop the active seizure. I think I knew it was a seizure. But what scared me the most was that I didn't know what effect it would have with regards to the surgery.  Meanwhile, Sophie sat in a chair in her nightgown next to a nurse. I had literally plucked her out of bed and put her in the van - no potty, no food, no nothing.

They gave Ted a CT scan almost immediately. Comparing it to the pre-op and post-op CT scans, his brain and the cyst look great. No swelling. No bleeding. They said it was a seizure b/c his brain was irritated from the surgery. We knew this could be a side affect. I guess I didn't expect something over a week after the surgery. So they admitted us to the PICU for observation and to figure out the game plan.

By the time we arrived in the PICU he was starting to come around a little bit. It's amazing what you can tell by the eyes. It's absolutely horrifying when you look into your child's eyes and there's nothing there. Nothing. But something so relieving when I could see life returning to them. I could tell he was starting to come to and understand although he didn't say a word or even attempt to talk. He slowly began to start squeezing our hands, looking at us and smiling in recognition and nodding yes or no to questions. He didn't talk for well over 3 hours from the time the whole thing started. It scared me - a lot. The right side of his face drooped for quite awhile. The doctors told us that the seizure had most likely started in the left side of his brain (where the surgery was) that has controls for the right side of his body as well as his speech. So it messed with those things considerably.

It wasn't until we were holding him down to put the EEG nodules on his head did he finally talk (yell), "I want Daddy to let go of my face!" Sweet relief! During his EEG we talked with two neurologists who were the Dr's we were dealing with this trip. They said that he obviously had a reason for having a seizure (which is a good thing) because of trauma to his brain. But he's more likely to have more. So they are putting him on an anti-seizure drug (Keppra) that he will have to take twice a day for about a year. After that time period, they will do another EEG and, if he hasn't had any more seizures and the EEG looks good, they will take him off the drug to see if he would have them again. He gave us a very long term picture of what could happen if this became a lifelong issue. The neurosurgeons all said that they believe this will not be a lifelong issue for him. Obviously, that's what we're praying for.

So, now I've been schooled on seizures of all kinds. We spent a little over 24 hours in the hospital and another restless night. Ted was his usual self by lunch time. (This all started around 8am). We're home again - hopefully not to go back. We've added another doctor to our round of follow-up appointments. Would anyone like to tell Ted that his Christmas present is a week's stay in the hospital, a huge scar on his head and a year of anti-seizure medicine? All for being headache free.

Ted's bandage came off on Monday. His incision is way bigger than I thought it would be. You can't really tell but it starts at his ear and curves all the way way up. I'm just going to say that it's bigger than my C-Section scar. And that was for 4 & 7 pound babies! The brown stuff on it is the silver that was on the bandage that acts as an antibiotic and tarnishes the skin. It's slowly disappearing with each shower.  I told Ben that he is totally in charge of showering and putting the ointment on it until the stitches come out. I just can't do it. And, the nurses told me it's curvy because that helps when his hair grows back and making it less noticeable. He get his stitches out on Monday.

 

Ted's class made him a book of cards and his teacher. So we read it in the hospital. It was so sweet. He's read it a lot and misses school. We're going to his class tomorrow to say hi and show them his stitches. He'll go back to school on Monday. I'm ready. He's definitely ready.

 One of Ted's nurses gave him a needle-less syringe. So he did some water experimenting. He was pretty bored while we were there. I'm super thankful for some fun gifts we got to help with the entertainment help.