It's in the little things

Brain surgery is huge. I mean incisions are made in the top of the skull to remove a flap of bone, exposing the brain. The outer covering is cut and the two hemispheres of the brain are slightly pulled apart to expose the corpus callosum. The fibers of the callosum are cut and once the bleeding is controlled the brain covering, bone, and scalp are stitched closed. We knew all of this before it happened. We were told what to expect. Surgery could last eight hours. There could be swelling. All sorts of complications. But we knew it all. We were prepared for the worst. We were ecstatic when the surgeon came out after only four hours to tell us how well Damonito had done. He invited us to the recovery room to see for ourselves. Damonito was asleep but he looked pretty good for just having had his head cut open. There was this small dot on his forehead, a cut, like the point of a knife. We speculated how it got there. So when the surgeon came back we asked. After the stress and worry of Damonito having brain surgery it was the cut from having his head screwed to the table that brought me to tears. No one told us. I guess they assumed we'd know.

Tooth and Nail

Last Spring Damonito's drop seizures were at an all time high. He was having hundreds of seizures every day and when he was upright and walking around they were the "crash and burn" kind of seizure. He had his very own padded playpen where he spent most of his time awake. It was simply too dangerous for him to be out on his own. When he was out, he was fast. He was so determined but his seizures were so intense that mostly he would collapse unable to catch himself. We couldn't take our eyes off of him for second. And even then there were injuries. Lots of bruises, some stitches, and a missing tooth.

Internal rhythm

Epileptic seizures occur when large numbers of brain cells send electrochemical messages rhythmically and in unison. It is this simultaneous "firing" the brain cells which disrupts normal behaviors and causes shaking, confusion, and loss of control. The vagus nerve stimulation chip or VNS is designed to prevent seizures by sending regular, pulses of electrical energy to the brain via the vagus nerve. It's something like a pacemaker for the brain. The VNS, pacemaker part, is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck at the base of the brain. Once it's in it's in. Half of all patients with VNS experience about a 50% reduction in seizures. Only 9% have complete control. We had to try.

"Shake well before use"

When Damonito was six months old he had a grand mal seizure that nearly took his life. A grand mal seizure lasting more than five minutes or immediately followed by another grand mal seizure can result in brain damage or death. This particular seizure lasted forty-five minutes. Damonito's medication levels are always checked when he is admitted to the hospital. His tegretol levels were 0. His pharmacy had mis-mixed his medication. To be more precise, they didn't shake it up before dispensing it. He hadn't had any anti-seizure medicine for two weeks.



We're not sure exactly what happened, if his ability to swallow had been compromised by the seizure or if it would have happened anyway, but at that time he lost the ability to swallow. He aspirated formula from his bottle into his lungs which creates a whole other set of problems. The G-tube went in and since he couldn't pass a swallow study he couldn't have anything by mouth. It would be two years and a lot of therapy before he would eat solid food. And he really didn't know what to do with it. It was a tactile experience. Mostly he played with it. He's getting better with it now. He can use a spoon. And sometimes he actually gets it in his mouth.

Two Thirds

The biggest difference between focalized and generalized seizures is that if Damonito had focalized seizures they could remove the part of the brain with the seizure activity and his seizures would stop. With generalized or "whole brain" seizures if they can stop the misfire from one half of his brain to the other there is a chance that the seizures will also stop.
The problem with the surgery is that if they cut the entire corpus callosum then the necessary communication between the two halves of the brain is also cut. Which means things we take for granted, like reading, would be impossible. So they cut only two thirds of the corpus callosum with the hope that is enough to stop the misfire. The theory is if two thirds works then seizures are controlled and the child could have some hope of normalcy. If the seizures continue, then consideration must be given to cutting the entire corpus collosum. Since Damonito's surgery only reduced the number of seizures without eliminating them, we have a lot to consider.