"Sometimes all you can do is
not think
not wonder
not imagine
not obsess.
Just breathe, and have faith that it will all work out for the best."
I found that the other day on Facebook, on one of the pages that I follow. It's strange how some days I will read or hear things that literally yank my attention. I feel like I've been walking around in such a fog lately that maybe that is the only way to get my attention.
It's almost like I need huge neon signs screaming for me to pay attention. When life gets SO OVERWHELMING & too much to deal with, I escape into this mental shell where it is just me fighting these huge life issues (& often fighting myself). I get the essentials of daily life done, but it's almost like I'm just shuffling along on autopilot going from point A to Point B. Just getting through the day.
I don't like making big decisions. Never have & never will. The hubby & i were planning a date night & 3 days later I still hadn't figured out what we were doing. Heck, I can barely get myself dressed every morning because I'm so indecisive.
The decision J & I are facing right now is most likely the biggest decision we will EVER make in our lives. It keeps me up at night. It follows me everywhere I go. It is a topic of conversation for everyone that already knows what we are facing. It puts butterflies in my stomach. It makes my hands shake & chest hurt from anxiety. It makes me cry at the slightest thing...every day.
What is that decision??
To answer that, we have to go back a couple of months. In a previous post I had mentioned how C-monkey was admitted to the hospital back in October for a video EEG to evaluate the new laughing seizures. We waited (very impatiently) for the Dr to meet with the whole Epilepsy team to discuss C monkey's case. When he finally called to discuss the results it was a whole 5 weeks later. Pissed would be an understatement at that point. He proceeded to tell me on the phone that Friday (as I'm heading into work, no less) that C monkey's seizures finally had a right sided focus (where the seizure is originating from one point instead of "all over"). He & the team recommended a PET scan and Ictal/Interictal SPECT scans to further evaluate what they were seeing. We found out the next week that C monkey would be admitted to the hospital around the middle of December for the SPECT scans, & we would go back on 12/29 for the PET.
December came, and we had all of the testing done during the craziness of Christmas, etc. The hospital stay was well, a hospital stay. We had a follow up appointment scheduled for January with Dr. Neuro. We hoped that all of the testing would be looked at and discussed and we would leave with a plan in place.
We forgot that C monkey is NOT a "rule follower". This is the kid that stumps most Doctors and throws the rule book in the air when it comes to clear cut answers. All of the imaging tests showed that he has a cortical dysplasia. We knew back in 2009 from a MRI & PET scan that he had this. The problem was, his seizures & EEG weren't consistent with where the dysplasia is located. So surgery was not an option. The current problem is that the tests do not all reflect the same location. (WTF is right)
Here is how C-monkey's dysplasia breaks down according to each test:
MRI (2009): right frontal
PET (2009, 2011): right frontal
SPECT (2011): right temporal
EEGs suggest widespread seizure activity, but predominantly right temporal
For those of you fortunate enough to not know the sections of the brain, here is a great
diagram of the brain to put it into perspective for you.
The image below is an example of what Cortical dysplasia looks like. It is the little whitish blob in the upper left of the picture. This is very similar to C-monkey's. I wish I had the sense to take a pic of it with my phone when his Dr had it on the screen, but I didn't.
It's almost like I need huge neon signs screaming for me to pay attention. When life gets SO OVERWHELMING & too much to deal with, I escape into this mental shell where it is just me fighting these huge life issues (& often fighting myself). I get the essentials of daily life done, but it's almost like I'm just shuffling along on autopilot going from point A to Point B. Just getting through the day.
I don't like making big decisions. Never have & never will. The hubby & i were planning a date night & 3 days later I still hadn't figured out what we were doing. Heck, I can barely get myself dressed every morning because I'm so indecisive.
The decision J & I are facing right now is most likely the biggest decision we will EVER make in our lives. It keeps me up at night. It follows me everywhere I go. It is a topic of conversation for everyone that already knows what we are facing. It puts butterflies in my stomach. It makes my hands shake & chest hurt from anxiety. It makes me cry at the slightest thing...every day.
What is that decision??
To answer that, we have to go back a couple of months. In a previous post I had mentioned how C-monkey was admitted to the hospital back in October for a video EEG to evaluate the new laughing seizures. We waited (very impatiently) for the Dr to meet with the whole Epilepsy team to discuss C monkey's case. When he finally called to discuss the results it was a whole 5 weeks later. Pissed would be an understatement at that point. He proceeded to tell me on the phone that Friday (as I'm heading into work, no less) that C monkey's seizures finally had a right sided focus (where the seizure is originating from one point instead of "all over"). He & the team recommended a PET scan and Ictal/Interictal SPECT scans to further evaluate what they were seeing. We found out the next week that C monkey would be admitted to the hospital around the middle of December for the SPECT scans, & we would go back on 12/29 for the PET.
December came, and we had all of the testing done during the craziness of Christmas, etc. The hospital stay was well, a hospital stay. We had a follow up appointment scheduled for January with Dr. Neuro. We hoped that all of the testing would be looked at and discussed and we would leave with a plan in place.
We forgot that C monkey is NOT a "rule follower". This is the kid that stumps most Doctors and throws the rule book in the air when it comes to clear cut answers. All of the imaging tests showed that he has a cortical dysplasia. We knew back in 2009 from a MRI & PET scan that he had this. The problem was, his seizures & EEG weren't consistent with where the dysplasia is located. So surgery was not an option. The current problem is that the tests do not all reflect the same location. (WTF is right)
Here is how C-monkey's dysplasia breaks down according to each test:
MRI (2009): right frontal
PET (2009, 2011): right frontal
SPECT (2011): right temporal
EEGs suggest widespread seizure activity, but predominantly right temporal
For those of you fortunate enough to not know the sections of the brain, here is a great
diagram of the brain to put it into perspective for you.
The image below is an example of what Cortical dysplasia looks like. It is the little whitish blob in the upper left of the picture. This is very similar to C-monkey's. I wish I had the sense to take a pic of it with my phone when his Dr had it on the screen, but I didn't.
 |
| borrowed from blog, "Neuroradiology on the Net" & ACR |
At least they are all showing up right sided, but the odds would be more in our favor if they were ALL either frontal or temporal. Dr. Neuro explained that this can happen because all of the tests look at things differently.
So, what is the big decision and how does all of this gibberish play into it? Right now, according to Dr. Neuro & the rest of the Epilepsy team our best treatment option is:
brain surgery.
That's right, to help our son hopefully live some kind of better life, we have to make the decision to let go of our precious little guy into the hands of a surgeon who will saw into his skull, and proceed to cut into his brain or cut out parts of his brain.
Kind of makes dinner decisions look rather minuscule, huh?
There are varying approaches we can take with it, and I rather post those once we have more solid information. We will be doing another MRI in about a week, & hopefully meet with the neurosurgeon after that.
It's been A LOT on J & I. This decision is weighing heavily on every aspect of us. We are scared about making this decision. So many what ifs. So many very scary what ifs. So many details to figure out. So many unknowns. I'm a planner. I don't do well with a lot of unknowns.
We feel we need to act quickly on this too. We feel like we are in a race with the seizure monster over control. Who is going to win? C monkey's seizures are getting worse. They are lasting longer. Coming on stronger. Harder to snap out of. Draining the daylights out of all of us.
The worst part of it all? They have stolen his real laughter.
We've noticed that this week, and it has been so heartbreaking. Those of you that have met him, you know what an adorable laugh he has. We've tried all of the usual gimmicks that always made him giggle uncontrollably.
Nothing.
Silence.
He isn't making any kind of sounds anymore. Only when the damn seizure monster attacks, & he laughs/cries with that. We have to find a way to trip that monster in this race.
To not let him win.
For us to win, we have to make the biggest & scariest decision of our lives.
