In late June 2010, we started the process of surgical evaluation. The first step was inpatient long term monitoring. At this time, Owen was a seizing machine, so we had no doubt he’d put on a good show for the doctors and give them the data they needed. When we spent most of our waking hours hoping Owen would not seize, it certainly felt weird rooting for the opposite.
I wish I could recall all of the details of this hospital stay, but time has made the memories a little foggy. I do recall his first seizure could not be fully documented because we had to disconnect the equipment and move into the hall for a Code Black. The Code Black was called due to a tornado warning. You don’t want to be caught in a hospital room with a gigantic window when there’s a chance of a tornado, no matter how important it is to capture data.
I also recall the seizure Owen had right before I was going to leave the hospital as it was my turn to get to spend an evening at home. My mom was going to take me home and had gone downstairs to get her car to bring it around to the front of the hospital. Right after she left, Owen had an epic cluster of seizures that went on for about 30 minutes. That was not uncommon for him at that time.
Before we left the hospital, Owen had his PET scan. At that time, the hospital didn’t have it’s own PET scan equipment. The equipment came to the hospital and we had to go into a mobile home of sorts for the test.
After a week or so stay in the hospital, the data was gathered. Now, all we had to do was wait for the doctors, the big brains, to have their meeting of the minds to determine if Owen was a surgical candidate. We waited, and waited. During that time, all we kept thinking about was what if surgery was not an option? What then? What would we do? We knew the odds were not in our favor with regard to finding a medication cocktail that would calm the seizures, as Owen had already failed numerous medications. We knew that by the time you failed two or three anti-seizure medications, the odds of finding one that worked became slimmer and slimmer. We didn’t even want to think about that.
We continued to wait, and wait. We waited for what seemed like an eternity. Owen’s first birthday in late July came and went and still we had not received an answer. Finally, about six weeks after our hospital stay we got our answer. The answer was YES! Owen WAS a surgical candidate. Yeah, we get to let the doctors remove half our son’s brain. If you had told me a year earlier, the day Owen was born, that I would be wishing for this at his first birthday, I would have been horrified. What a difference a year makes.
Shortly thereafter, we went to speak to the doctor to find out what she recommended. Our hope, of course, was that she would only recommend removing a small portion of Owen’s brain. She told us that the seizures seemed to be coming from the right side of Owen’s brain. Given the information she had available to her, she recommended a right hemispherectomy. Of course this was the most drastic option. Go big or go home, right?
They explained that after the surgery the left side of Owen’s body would be weaker than the right, kind of like if he had a stroke. His left hand wouldn’t have much in the way of fine motor control and would be more of a “helper” hand His left leg would be affected too, but not as badly as his hand. He would also have a visual field cut on his left side. Luckily, I had first hand experience of what that would mean for him as I had a right sided visual field cut due to my stroke. It would mean he and I would both be accidentally walking into people if our heads weren’t turned just right.
We worried how the surgery might affect his personality. Would it change? Owen was a happy, happy boy in spite of his illness, with the sweetest disposition. We did not want that change. We were assured it would have no affect on his personality.
What made our decision to move forward with the surgery was that if it was successful, Owen had a 80% chance of being seizure free and leading a more normal life. How wonderful it was to have hope after the nightmarish year we’d just endured. We decided to move forward with the surgery. Given the odds, the decision was a no-brainer (pardon the pun).
Our decision made, they told us of an epilepsy study they were doing and asked if we wished to donate the brain matter they removed from Owen to help with the study. We said yes….without hesitation. We thought it may help Owen someday, and if not, perhaps someone else would benefit from the research done on Owen’s brain. Why not put a positive spin on something so negative?
The surgery date was set for October 20th. I will never forget the morning of the surgery. I was both relieved and horrified that the day was here. We had to be at the hospital bright and early. I remember waking Owen up to get him ready. Poor thing’s hair was a mess, not because he just got up, but because of the hack job I did on it the night before. I don’t know why, but for some reason I decided to cut a few locks of his hair to keep. I ended up giving him a very shabby looking mullet. Of course he rocked the look.
My little mullet boy woke up in such a good mood that morning. He was so happy and full of smiles, even more so than us
ual. He had no idea of what the day held in store for him. I took a picture of him before we left for the hospital. It’s one of my favorite pictures, but to this day, I can’t look at it without feeling a little sick to my stomach.
We arrived at the hospital where Owen was prepped for surgery. Before we knew it, the time had come and we had to leave our little boy, still smiling, with the anesthesiologist. It was the hardest thing we’d ever had to do. Even though we knew we made the right decision, we couldn’t help but second guess ourselves in that moment. After all, we were making a decision for Owen which would affect the rest of his life. We left Owen and headed to the waiting room where we would wait and wait and wait.
I Don't Have Time for This Sh*#! 