It's just SO cliche.
That we would fly out the day that mad thunderstorms roll through Philly. Precisely where we need to land. So that we can hop our connection to Detroit.
It's also cliche that that exact connection to Detroit would be cancelled. Along with two others. Leaving just one remaining evening flight left. On which we were able to scrape three random seats...by the hair of our chinny chin chins! Thank God there was at least one US Air girl with a brain in her melon!
And it wasn't the one who met us at the top of the ramp stress-shouting,
"WE CAN'T HELP YOU! IF YOU CHOOSE TO NOT RE-BOARD YOUR PLANE TO PHILLY YOU'LL BE SLEEPING ON OUR FLOOR FOR TWO DAYS!"
Nope. Wasn't her. And her shouting didn't help our already stressed to the max selves either. We all wanted to be in Philly...not diverted to Norfolk anyway!
Thanks to a less stressed and much kinder girl...we held in hand confirmed seats on the last flight to Detroit. And yes...I did play the sick-kid card! Although we sweated it out for six hours...until 9:30...cause no one could assure us completely that that flight wouldn't also be cancelled. And if that flight also had to be grounded we would have been forced to rent a car for the remnant of the journey. Cause every flight to Detroit for the next two days was booked solid! And nobody really cared that we were headed to a brain surgeon. With a Seizure Boy.
I swear...you just can't make this stuff up!
Around 11:30 pm (which according to our itinerary shoulda been AM) we staggered into our hotel room.
Which by the way...when I asked for a city view I was NOT thinking about heights. Probably because I've never really stayed in a hotel with more than a handful of floors. 57th, baby! It was a city view alright. Not that we were ever brave enough to do more than peek with one eye out the curtains shielding our wall made of window. Overlooking Canada!
The following day EEG admission and hook-up went on without a hitch.
Although we created lots o' drama about turning up our noses at the hospital issued jail cells. They like to call cribs. And bringing instead a pack n' play. Which makes Trevy feel more at home. And came in super duper handy since he wasn't really able to move more than 2 x 2 feet! Their video camera is stationary. Which basically meant...so was Trevy. That was fun. Not.
But we survived. And they even unhooked us a wee bit early.
Trevy has two little round electrode shaped spots on his forehead. Looks like burn marks actually. Maybe from the glue. Jonathan says it's exactly what he's always pictured it would look like if aliens ever came and ate our brains. That made me laugh.
Of course we were tense. Anxious. Crazy butterflies. About our meeting with Dr. Rockstar.
you don't travel half way across the country. With a toddler in tow (who did fabulous btw). And meet with a specialist. About brain surgery. And it not hold an enormous amount of emotion.
Although...contrary to every other specialist meeting I've ever participated in...I DID NOT write down all my questions.
I chose to just let it roll this time. I figured Dr. C knows his stuff. And I pretty much know mine.
Nobody was unclear about why we were there.
I would be lying if I said there wasn't any disappointment involved.
I was disappointed that we came half way across the country to sit with the Rockstar. Only to be crowded into a room with half a dozen docs in training. And Dr. C's attention was divided.
Between Trevy. Us. And his "puppies". I've decided that's what docs in training remind me of. Puppies. Cute...in a pain-in-the-boot kinda way.
I also hoped he'd walk into the room and immediately be smitten to pieces by Trevy's cute factor! The nurses upstairs were. People we passed in the hall were. Especially with the curls long and springy from a fresh post-EEG shower.
He was not. Although he did pick Trevy up and hug him. And said two things...
"Well...he's delayed. That's quite obvious."
When Trevor decided he wasn't really down with being held by a Rockstar sporting a white coat and proceeded to fuss and reach for me...he added...
"Stranger anxiety is a good sign"
Our conversation swirled through Trevy's medical history. Which I can repeat frontwards...backwards...standing on my head while drinking lemonade from a curly straw.
We were told that the MRI wasn't helpful for surgical purposes. This wasn't a surprise.
Neither was the EEG. Actually, I was a little pissed when the good doctor said that EEGs on children in the throes of Infantile Spasms are pretty much pointless. Because as evidenced by Trevy's hypsarrhythmia saturated case...it makes finding a focus impossible. What planet were they on when I told them my son was having clusters of seizures all day long??? Which by the very definition IS Infantile Spasms?! Why would they make him endure that torture...and sport forehead burn marks...if it was going to be a pointless test?! That was terribly disappointing. Both because it was a hell-ish night of pointlessness. And I was desperately hoping that his EEG would be hyps free...as an explaination of why we're seeing some foreword developmental movement.
That was the bad news.
The good news is...
Dr. Rockstar feels that Trevy's PET scan is VERY significant of foci in his left hemisphere. Over his temporal lobe for sure. And possibly into his frontal lobe as well.
Trevy's speech delay strongly supports the PET scan evidence.
And we have those wonderful left-sided only past EEGs...which support the PET and the speech delay.
Plus...there are the video clips I took a year ago. The ones where Trevor's seizures were so very subtle that I thought I was going crazy. And so did others. But Dr. Rockstar watches the videos and sees the almost imperceptible eye deviation and head movement. To the right. Always to the right. And feels that we're now building a bridge towards surgery. My words...not his. I like mental pictures.
Because not all of the evidence is supportive of left-sided foci the surgery door is only open a smidge.
But an optimistic-maybe smidge. His words...not mine. I'd have preferred setting a date right there in his "puppy" crowded office.
Instead we were sent off with homework.
I need to get him a disc of that left-sided EEG. And a disc of the PET scan...which was sent in printed form instead. And he likes to fiddle with the colors himself.
He will be presenting Trevy's case to the surgical committee the Monday following receipt of these pieces.
Tentatively Monday August 18th.
If approved...surgery will then be scheduled 4-6 weeks later.
I'm not really quite sure what the term "fellow" means. But he's one. Dr. V, I mean.
And he chased us down at the elevators. Where we waited in a hazy fog for the doors to open.
I'm thinking he didn't want us to go home feeling foggy. And so he came to assure us that he's worked with Dr. Rockstar for a long time...and he can tell us with clarity that Dr. C believes Trevor will be a surgical candidate.
And reminded us that Dr. Rockstar is the head of the surgical committee. His thoughts have pull. And evidently he's quite persuasive.
I had a good cry sneak up out of nowhere on the flight home. Lucky I happened to be reading My Sister's Keeper. Which I alternated burying my nose in the pages and wiping on Jonathan's shoulder. Hoping if anybody happened to see my wet cheeks...would think it was something I was reading. And not something I'm living.
My messages to Dr. Nuero and Nurse Sue started in route back to Providence.
My tenacity paid off. Because I know for a fact that the EEG disc is ready to go! Just a day after request! Technician Lynn called to let me know.
I'm crossing fingers that today we hear about the PET scan disc.
And then we send the final optimistic-maybe pieces of the bridge we're trying to build to Dr. Rockstar. And pray. Hard.