Brain Surgery? Wow, did I just type that?

We met with the Chief of Pediatric Neurosurgery and Epilepsy Neurologist from Oakland Children's Hospital on Monday. Nicholas' Neurologist recommended we meet with them to discuss our options for Nicholas and brain surgery. We have tried so many things over the past twelve years for Nicholas in regards to his seizures. Various medications, vagal nerve stimulator, ketogenic diet... all had our hopes of helping to control his seizures. Some helped and some still due, but the fact is that Nicholas still has seizures daily and they have never, I mean never, been controlled.

I remember when Nicholas was little and we talked about brain surgery, we never thought we would have to "go there". We  always had hopes that this isn't what his life will always be like with daily seizures. We never gave up thinking that the next med, or the next procedure wouldn't work. We didn't think they were they cure all but we thought for sure they would help or at least diminish his seizures. Unfortunately, we were wrong.

The neurosurgeon was very realistic. They told us that this isn't curative, this is palliative. It would help give Nicholas a better quality of life and that is all Ray and I have ever wanted for Nicholas. Anything we have ever had him undergo was to help him live more comfortably.

I remember having his G tube placed. I thought I was the worst mother on the planet. How could we have failed to keep him thriving. He was losing one of the best things in life, to be able to taste and eat food. I felt like a failure. Ray was always positive and said we did everything we could, it just wasn't enough. In hindsight 3 years later, it was the best thing we could have ever done for Nicholas. He is healthy and thriving and when he is sick there is no stress around getting food into him so that he can have his seizure meds if he has a flu. We can just put his meds and his food through his tube and he is taken care of. It was life changing.

When we had his back surgery, I thought personally I was never going to get through that and it wasn't even about me! But as a mom, I didn't think I could handle putting him through so much pain. The worst part and it always is, is putting my child through something that he doesn't even know is coming or why we did it to him. He only knows he is in pain and doesn't understand why. That, I think is the absolute worse thing in the entire world. The pain is so hard it makes my heart literally hurt it. With all that pain though came the beauty and wonder of a straight back and a kid who is so much more comfortable and healthy. He can breathe with both lungs completely and sit tall when he is working in his program. He no longer has to focus on trying to sit up but can focus on what he is trying to learn. It is simply amazing.

We won't be doing surgery until the beginning of next year but after all that we have been through in the past and with the amazing outcomes we have had, we know this is the best decision we are making for Nicholas. His seizures will be hopefully cut in half in severity and the goal will be to come off of some medications. It will be a terribly trying time in our lives once again, but I know in my heart, we just may see the light in the eyes again of our angel boy Nicholas.