Weekend at Cleveland Clinic Update 4: 07-26-09
Had rounds with Dr. Lachhwani this morning, fairly early. Damn I dig this dude. The only doctor in my entire history who has shaken my hand every single time he says goodbye. Something about that I admire.
Anyway, they aren't going to disconnect Bennett today, they are gonna leave the leads on and stay one more night. What he couldn't tell us is whether we would be discharged tomorrow or not. If they happen to be able to get some sort of Neuro-Psych eval scheduled for tomorrow, they're gonna keep us another day. If not, we leave tomorrow afternoon and come back for the Neuro-Psych later.
But I did tell him that I need the answer on that, whether we stay or go, by tonight, as I have to put things in motion. He was cool with that.
So, about the meeting. Bottom line is that according to all the EEG data Bennett's seizure activity isn't clear-cut single focus...but, that doesn't mean we aren't likely going to go down surgery road, because it looks like the odds favor that. The Dr. feels that the malformation in the left temporal lobe is the kid acting out in the class since there are many things that DO originate from that spot, and that any other apparent focal spikes (other kids getting riled up) are a generated result of the discharges that occur in the left temporal lobe.
Remove the disruptive kid, chances are that the rest of the kids calm down. Chances are. He was pretty blunt. 60-70% chance of seizure freedom, and then varying degrees above that of seizure relief with any other seizure activity possibly controlled with medicine. And of course, there is a chance it could do nothing. Yeah...that we knew already.
He was frank but very optimistic...ideally you want the MRI to say this, then the PET to back it up, then the EEG data to back that up, but in many cases similar to Bennett's, not identical because no two cases are, that just does not happen. But you take all the evidence, all the data, and then look at the boy's development in all these areas except the one area where he has the malformation. So many of these things even though they are not 'definite this' and 'definite that' lead us to make very educated suppositions.
I guess it's almost like solving a murder, solving a puzzle, whatever...answers are usually not just YES and NO...they are generally somewhere in between.
But this is all still all just talk. They'll present the case Tuesday to the team, the team has to confirm it though Dr. L was pretty convinced that Bennett would be selected and that he could really benefit from the surgery. We'll have to come back and meet the principle players, and we'll have to schedule some stuff. To me te odds would favor a grid placement pre-surgical evaluation, I'm all for ANYTHING that can make the outcomes more favorable. But that's me guessing.
All part of the journey, which is an ongoing process. We could get further down this road and then change direction, all depends on what happens each given day.
We are adding a new medication, Lamictal, today. We are also going to begin a Vigabtrin wean I believe. He mentioned some other med he wants Bennett to try and dammit if I forgot it already. I will ask him tomorrow. That's down the road.
It's all very confusing at times. In these meetings I need to process, think, read, talk and research. But as it stands right now I think the odds are favoring a surgical procedure sometime in the next couple of months. He seemed to believe it could be a matter of weeks and thinks that it should not, for Bennett's sake, be some long, drawn out process.
More as I know it...
One interesting side note. I still cry most of the time when Bennett has seizures. We're coming up soon on the six month mark...and it still isn't any easier to watch. I'm mentioning this because I never want to get used to it, ever. Keeps me motivated to push forward. It's important to me. It wrecks my world mentally, and this may sound odd but I want my world to keep getting wrecked by it. I need it. At least for now, as there will be a lot tougher moments ahead.
Dunno why, just thought about that and wrote it down. Probably sleep deprivation.