Monday, August 17, 2009
I sure hope...
they grow back curly!
Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow.
My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom.
The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner!
I swallowed. Took a deep breath. And clicked connect.
Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him.
Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate.
And then proceeded to lay out The Plan. Which he made to sound will be unfolding in the near future. Because the team is very disturbed that Trevor is having...and has been having...hundreds of med resistant seizures daily. For the past year. A scenario which they believe surgical intervention could alter. Is it morbid that for the fleetest of moments I felt vindicated that they would notice? And that I was not alone in my disturbia? Which is not just limited to my flesh and blood...but extends to all the other families I've grown to love through this journey. I deeply love you! And I know the mountains of courage it takes to live moment by moment. From one seizure to the next. Which is why my heart was soaring and sorrowing all at once.
But I didn't have time to linger. Dr. Fellow was marching onward into what to expect next.
MRI on a Friday.
PET scan on Monday.
Wait...wait...wait...a bloody sec! The additional PET scan threw me for a loop. And I said as much. If we're all convinced surgery is a viable option for Trevy...why? Why risk an additional test that may or may not add to the clarity. My fear being the latter.
I'm not sure that his answer put my heart to rest. In part because he never really answered the why of it. Although he did alleviate portions of the fear. He assured me that the additional PET scan (being requested by Dr. Rockstar) would have to reveal significant right sided metabolic slowing for Trevy to be disqualified. They don't anticipate finding any right sided slowing. Only left. Which would further support our direction here. But nevertheless...Dr. Rockstar makes the rules. So an additional PET scan we shall have. On the Monday after the MRI.
So again it's...
Monday PET scan
Tuesday Grid placement
Thursday or Friday Hemispherectomy. In layman's terms...the removal of half of Trevy's little brain. The damaged...seizure saturated...monster's lair...half. Slaying the beast forever...is our hope.
There are still details to be sorted. No dates yet. Just told to expect it to be soon. Which I'm sure someday...in hindsight...would be appreciated.
Today. It's just kinda hard to breath. What with the humidity...and hemispherectomy...lingering in the air.
It's good news. It really is!
I just wish the good would negate the freakin' scary!
Jonathan and I are yet feeling a little numb. And the only thought that keeps breaking through the freaked-out-fog is...
I sure hope they grow back curly! Cause I adore those curls! And the boy wearing them!