Two months post-surgery

Dear Family and Friends,
Just a little more than 2 months after the surgery now.  Ben had a run of seizure-free weeks post-surgery - about 6.  The seizures came back suddenly and fiercely about 3 weeks ago.  Our doctors say that we won't really know the outcome until about 6 months have passed.  So, we remain hopeful that it will still change.  In fact, the last two nights, the seizures have been shorter.  Maybe it will last?!  Maybe it will get better, maybe it will get worse.  We seem to have little control over it so we are not going to fret. I just wrote a short piece for the Orion BioNetworks newsletter on our experience with epilepsy and the need for a new approach to research on this complex brain disease.  I've been working with Orion to start a project in epilepsy because I believe their approach is the most likely to yield an understanding of epilepsy that will make a meaningful difference to patients.  I'd like to share it with you:  http://www.orionbionetworks.org/2015/04/01/state-of-mind-epilepsy-a-mother-and-scientist-advocates-f...
All my best,
Catherine

Ben's Recovery

Ben's recovery has been a little slower than we'd thought - though, to be honest, we had no idea what to expect.  Unfortunately, Ben and I both caught bad colds soon after we returned from our two-week hospital stay.  Ben quit eating and drinking for a few days, scaring everyone! But he is back on track, his appetite has returned as well as his interest in his toys and head hugs. Today, during the superbowl, we got belly laughs again - the highlight of my year!!
I think I underestimated the trauma the surgeries and hospital stay caused Ben. He's never wanted me to hold him so much. I don't think he left my arms for 3 days after we got home. We have two dear friends of the family who are both surgeons who have reminded me of the time it takes to recover from surgery (thanks Jerry and Phil!). It helps to put it all in perspective. Add to that the fact that Ben is now without a part of his brain...  I keep thinking of what he lost as "bad brain", brain that was causing him harm, but kind of difficult to wrap my head around nonetheless. He's less stable on his feet, which makes sense and we were told to expect, given that he lost part of his parietal lobe, Everyone is remarking on his daily progress in regaining stability, though, and we all know how plastic and amazing the young brain is - and, in fact, we are learning the old brain is also plastic so all of us "older" people need not despair!

Let's keep this beautiful child laughing while he relearns how to move his body in space.
Enjoy his laughter :)

Ben's Brain Sugery Recap

We finally made the decision to proceed with an evaluation for brain surgery for Ben. This was the culmination of years of evaluation and second and third opinions. Ben's seizures had progressively worsened over the past two years to the point where he was at high risk of status epilepticus (going into a seizure that we wouldn't be able to stop) or SUDEP (sudden unexplained death in epilepsy). Seizures were often 15 minutes long and difficult to stop with rescue medications. Luckily, our new neurologist at Stanford, Dr. Brenda Porter, was willing to proceed with an evaluation, and brought on board one of the most amazing neurosurgeons we could have hoped for, Dr. Gerald Grant. The first surgery happened on 1/21 and involved pretty agressive grid placement directly onto the parietal lobe of the right side of Ben's brain. After the grid is placed (in his case two full grids, a couple of strip electrodes to cover the sides of the lobe and some depth electrodes), the skull is replaced and the scalp sutured. Recovery from this first surgery was brutal. Ben had a lot pain and nausea. He was the hooked up to EEG recording machines - 15 large electrodes attached to leads coming directly out of this brain, wrapped in gauze and padding and then secured to his head.

Swelling got progressively worse over the next three days so that both eyes were completely shut.
By Day 4, he got to see again through little slits. Spirit improved. He started eating and drinking and even playing his drums again. We weren't able to gather the data we'd hoped for because he wasn't having his typical seizures. Surgery #2 was delayed by 2 days to give us a chance to capture more seizures. On 1/21, he had the worst seizure we had ever witnessed - violent convulsions and face distortions that were not part of his normal seizure pattern. It was scary - the seizure wouldn't stop for 25 minutes. Two heavy doses of two different seizure medications were required. Valium and dilantin. It was helpful in the sense that we got a glimpse of what status is and how critical it is to try to help him now. He got so much dilantin to stop that seizure that he experienced dilantin toxicity. He didn't recover from that seizure until after his second surgery, two days later. After agonizing decisions about what would be best to do, surgically, Aaron and I and the team decided that our best chances of ameliorating the seizures while preserving as much function for Ben as possible, would be a partial parietal lobe resection. This was done on Friday, 1/23. The surgery went as well as we could hope. Motor cortex was clearly mapped, the seizure activity immediately decreased by EEG post-resection - not much of a predictor of long-term outcome but encouraging nonetheless.
The afternoon he got back to the ICU after his second surgery, I saw little seizures and my heart sank to the lowest depths I'd experienced. I couldn't believe it. Thankfully, our angel of a surgeon came by a bit later to assure us that that kind of response is completely normal and NOT a predictor of long-term outcome. He had had to manipulate the brain in order to do the resection and little seizures post-surgery are very common, even in a patient with no history of seizures (brain tumor removals, for example). During that first night, the seizures stopped and we haven't seen any since (knock on wood). Days 1 and 2 post-op this time were much easier, definitely pain as to be expected. We tried hard to keep that under control while balancing allowing him to wake up. He was great at sleeping as much as he needed and not that eager to face the world. Slowly, he woke up and spent more and more time awake with us, eating and drinking. We saw a new grumpy Ben we had never met before! We are now home safe and sound, Ben is in much better spirits in his home environment. I even got a tiny little smile today. Will try to keep posting as we continue our journey. Long-term outcome is still very much uncertain, but we know - no matter the outcome - that we have done everything possible to give him a chance at a good quality of life. We are so incredibly grateful to our family and friends who have supported us through this insanely difficult time, and to the Neurology/Neurosurgery team at Stanford, without whom this would not have been possible.