What Doesn't Kill You Makes You Stronger?

My youngest son was playing today and he often sings while he plays. From the other room I heard him singing the lyrics to Stronger by Kelly Clarkson - "what doesn't kill you makes you stronger..." I stopped and thought about the words coming from his mouth, wondering if they are really true. So many times people make comments about how strong I am because of what we're going through with Seth. Funny thing is, most days I don't feel strong at all. Some days, I wish I could give up and walk away, and not think about seizures or surgery or medical bills ever again. Many days I would rather pull the covers back over my head in the morning and sleep the day away, avoiding reality. I never wanted to know so much about the brain anyway.  I could be perfectly fine if I never had to think about anti-seizure drugs or spikes in brain activity or seizure precautions again. Why did I get picked for this role?

The thing is, I just don't have a better option. Whether I want to be or not, I am Seth's voice, his advocate and decision maker. As every parent wants, I too want what is best for my child. Unfortunately we've had to make some really tough decisions to try to get there, but I don't know if that makes me stronger. Will they be the right choices? Only time will tell. But I know in my heart that I am making the best decisions I can make for Seth right at this moment. And someday maybe I will know whether I really am stronger. 

Surgery is Scheduled

Since my last post, we survived what will forever be known as the Great Derecho of 2012 and the ensuing eight days without electricity. I am happy to report that we are back on the grid and enjoying the comforts of refrigeration and lights. 

We were recently contacted by the neurosurgeon's scheduling nurse and notified that Seth's surgeries have been scheduled for September 11th (the day after Seth's 10th birthday) and September 18th. While we had hoped to have surgery completed during the summer months to give Seth ample recovery time before the start of school, we weren't able to make it work. Therefore, he will start school for a couple weeks and then will be off for at least a month for the surgeries and recovery. After a couple weeks, providing there are no complications, he should be able to gradually start returning to normal activities. We have notified the school that he will need home tutoring throughout the recovery period, and will start the process of requesting those services next month. 

Once the grids are placed after the first surgery, we will need to wait for Seth to have a seizure, and the hope would be for him to have at least three, to get exact measurements of the seizure origination points and complete brain mapping. In order to prime Seth for seizures, his medications will be reduced a full week before the first surgery. Since Seth did not have any recordable seizures during his last inpatient stay for video EEG monitoring, of course I asked the question. What if? What if we wait an entire week and Seth has no seizures? If Seth does not have a seizure prior to 9/18, the second surgery would be delayed a week and we would continue to wait. They will not leave the grids placed any longer than three weeks, and I pray that we won't be waiting anywhere close to that length of time. 

Best case scenario, Seth would have a cluster of seizures within days of the grids being placed and we find that the seizures do not originate in either the language or movement areas of the brain. The second surgery would be performed as scheduled and we would be able to bring Seth home several days later to continue the recovery process at home. 

Although Seth has not wanted to talk much about his upcoming surgery, he seems to be accepting of what is to come. I am encouraged by Seth's faith and trust in me, and am pleased that his biggest concern right now is not missing a favorite TV show. Please pray for Seth's comfort, of both body and mind, throughout this whole process. While I have many concerns on my mind, the greatest is helping my sweet boy to come through this with peace of mind and a healthy brain and body.