Overtime with the Seizure Monster



I found this lovely gem of encouragement the night before our appointment with Dr. Neurosurgeon. Those of you that know me the best, KNOW this slapped me right in the face. I was so thankful to have read it, and to read it again tonight for reassurance.

 

Tuesday (2/21) we were scheduled to meet with Dr. Neurosurgeon at 12:30. We got there a little early as we usually do since we commute over an hour to get there, and we never really know what the traffic will be like. We checked in and found out the wait was going to be about an hour and a half. Uggghhhh, just what people with major anxiety enjoy doing most...waiting.

We killed the time by feeding C-Monkey some lunch, playing on our cell phones, C-monkey played with his toys, people watching, and me surfing around on my "happy place" ~Pinterest.



LOL! Those of you on Pinterest know this is true!



We FINALLY got back in the room, and waited some MORE!! Why didn't we pack a picnic and sleeping bags? We finally saw Dr. Neurosurgeon at 3:00. We were so anxious to hear what he had to say that we didn't flip out over the wait.

Once he opened his mouth, I knew we weren't leaving there with what I thought we would be...a solid plan. Long story short, they really did not get any concrete evidence on Monday's MRI that swayed their thinking and compelled them to commit to surgery. I scanned in a couple of the images from the MRI, and I see the dysplasia. I don't know if it is just because I know what we are looking for. I'm going to do a little experiment and see if other people that DON'T know what they are looking for notice it. I will post the unmarked pics below, and the marked pics at the very end of the post. Let me know if you were able to see the area or not.



Do you see what I see???



Where's seizure monster??

  

They had already planned on presenting him in conference which was supposed to be tomorrow, but the chief of Pediatric Neurology, who has oodles of experience, is out of the country, and I could sense Dr. Neurosurgeon really did not want to conference without him. Me being the modern smart ass that I am asked, "Well, can't you just skype him in?" Duh?? Not likely that will happen so they will conference next Friday instead, & the 10 Doctors on the team (peds & adults) will really scour ALL of the information that they have. So fingers crossed we will hear something next Friday! Actually Dr. Neurosurgeon guaranteed us we will!

We got some "what if" scenarios from the surgeon so that was eye opening. He personally does not feel like a corpus callosotomy would be the most benefit to C-monkey. He believes our next best step, if the team agrees to move forward, would be to place subdural electrode strips on C-monkey's brain via 4 burr holes in his skull. He said he would be in the hospital connected to those for maybe a week. Our hope would be to get the most precise information on whether or not we are battling the right temporal or right frontal sections. We would then decide what surgical course would be the most appropriate. We were disappointed to say the least that once again, things are not clear cut. I'm just trying to think of it as we are in overtime in our match against the seizure monster.

The one great thing from today's appointment, was that I think Dr. Neurosurgeon really got a glimpse of how urgent it is that we do not drag our heels in this.

We have to make decisions.

We have to make the best decisions for C-monkey.

To pull him out of the grips of the seizure monster...but we have to do it quickly!

So we re-energize and prepare to keep fighting the greatest fight of our lives.

We just want to be in the last seconds of the match with our feet pinning the seizure monster to the ground when the buzzer sounds. It is just going to take a little longer than expected.

"Everything always works out somehow. It just does. Be at peace..."

Did you guess right?