8.06.2009

optimistic maybe

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.









I mean...










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."




Ouch.




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.




Emails too.




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.

16 comments:

blogzilly said...

And there it is.

I think it's a good result. Yeah it's not a definite but it is hopeful.

I totally forgot to warn you about the puppies, which as always is the greatest term ever to describe the interns and residents.

Well, I'm not a praying man, but I am a thoughtful one, and mine have been really pushing for a turn in a great direction for you, and I think this is.

I'm pissed about EEG stuff too. Frankly? Sometimes I think they hook the IS kids up to the EEG's just because that's what you do for Epilepsy and they can't NOT do it. Plus it probably really pads the visit costs for them.

Adesta said...

Wow...give me a minute here, I'm speechless.

Ok, I know the surgery is not set in stone, but Dr. V's assurances to you and J as you were leaving made me feel better about all of this, as I'm sure it did you. Also, a fellow is someone who's involved in research or can be a name given to someone of equal class/position. I think in the medical field the term is given to those who are in the research area...

Sorry to hear you had a rocky start to your trip, but glad it all worked out ok. Being stuck far from your destination is never fun. Especially with a toddler in tow who's always having seizures. Glad to hear he did so well though.

Happy that you are all home again and safe. I've missed your postings!

Colby said...

Danielle...I know this post was MOST helpful to Ken and others that are/might be going through this evaluation process....Y'all paint such a clear picture of the reality of the situation and your emotions that come along with it....Such a GREAT thing for everyone to read...Even those of us who are not fortunate enough to have surgery as an option....It feels SO good to be reading about each of you!

This all looks VERY positive...I just close my eyes and imagine two little angels, Trevor and Bennett, being healed through these procedures very soon and a healthy and peaceful life for all of you!!

I am hear if you need me...

Cyndi

Anonymous said...

Oh,I wish I knew you were stuck in Philly. I'm glad you made it out in one piece. Consider yourself lucky you didn't have to do a 3 day EEG like we did (still don't know why we were subjected to 3 days when everyone else does 1 day!)

I'm glad too hear surgery may be an option and they're moving forward quickly.

Erin M.

Anonymous said...

I love how you capture your emotions so effectively.
I am praying hard for that PET scan disk to come in and for you to get your answers. From what I have read from some of your other IS Family, i just really dont think he would give you false hope and I dont think Dr. V would have either if he hadnt already been down this road before and he knows that the surgery option is very much there.
I love you all!
Love,
C

Abbe said...

wow. i don't even know what to say this time. what a journey you're on (serious understatement, right?!). i'll keep praying, and am thankful that you'll keep blogging! :)

Liz said...

Love the building a bridge metaphor. Sorry about the divided attention thing. I am glad to know that, so I won't be disappointed. Then again, knowing our Neuro doesn't see Maddie as a surgical candidate, I think I am probably going to be disappointed by almost everything on this trip. But I still feel we have to make it.....

I am so glad that it looks like surgical doors will be opening for you and that you may be able to banish the seizure monster from Trevy's head. I have high hopes. And I will continue praying.

Anonymous said...

Sending hugs, prayers, and peace of mind...your way!

xoxo Deb

Holli said...

I had the most vivid mental picture of you all at the airport. Total movie material! We were the ones running to the gate with tickets in hand...because no one told me how awful it would be going through security. With a toddler that has to be carried. And a stroller. And fluid filled bottles. And meds. And baby food jars. We JUST made it in time!

I was pretty miffed about the pointless EEG myself. Wish we would have waited now. Austin sported three nice circles on his forehead too. Took several days for them to clear up.

But, all in all...sounds like a very productive trip. VERY. I have such a good feeling about Trevy! And if it weren't for your endless dedication. You know the rest. Either way it turns out. You're an inspiration to so many of us!

Now. I'm going to write that email. You've inspired me to keep fighting for answers!

:-) Holli

baby trevor's mommy said...

Ken...you KNEW about the puppies?! ;)

Adesta...it did make us feel better. Or at least more hopeful.

Cyndi...I LOVE you!

Erin...I think I woulda lost it if we had to do a 3 day-er! And next time we're stuck in Philly...you'll be gettin' a call for sure! ;)

C...I keep telling myself the same thing about the false hope...

Abbe...you know what? It was surprisinly easy NOT to blog? Yikes! Although FB was kinda like an addicts patch!

Liz...I think now that you know about the puppies it'll help you have more control. Or at least expectations. He was very sweet with Trevor. I just wish it had been a little more private. But then Trev was flirting with the girl pups...and that was good for Dr. C to see. I'll be praying alongside you...the buildup is really the hardest part.

Deb...thanks, sweetie! And keep snapping those smiles! SO precious!

Holli...don't make me come to Texas! You'd better send that email! ;) xoxo

...danielle

Jenny said...

I will be praying hard too.

Mrs. M said...

Whoa!
The airline staff? Come on! Where is the professionalism and just plain humanity in that girl's response. Yikes.
So proud of Trevy for being such a stellar of a rockstar....doing so well throughout all the EEG business, strangers, etc. What a trooper!
Dr's & their puppies...I too hate that. It makes it much more impersonal. Here they have weird titles like "Medical Clerk IV". Really? And why is that I should let you touch my child or question me personally with a title like that, Mr. 4th Yr Med Student.
Hope & fear & relief? Wow. So, so, so much to consider and coordinate still! Thank goodness for the kind "Fellow" who chased you down...it must have felt confusing and better to hear his words. And if it all does go through...when it does...it'll be so fast! 4-6 weeks after Aug 18? That'll fly by. Trevor (and you too!) is on my mind often. I do hope it all works out to his very, very utmost best. He deserves relief and freedom from the seizure monsters! But I know I'm singin' to the choir sista on this note.
Now that you're home...have a good sleep, hug all your kiddos, cuddle up with hubby and enjoy your family.
Hugs,
Margo

KC's Mama said...

Wow, I don't even know what to say! I'm so sorry that you had to share that short visit with a bunch of docs in training. Sometimes I get it, and other times I hate it and feel cheated. I don't blame you for being disappointed with that aspect of things. BUT as I mentioned on FB, I am so hopeful that Trevy will get his surgery! You are in my every prayer right now and will be until.
Karen

P.S. I am sure Dr. C was totally wowed by Trevor's cuteness. I think it would probably be hard not to be, even for a Rockstar Dr. ; )

therextras said...

My thanks to you for the post. I'm breathing easier knowing the outcome of the trip.

I haven't forgotten you or Trevy in my prayers. I was without internet Wed-Fri, and have been maddeningly busy since returning home.

Puppies.is.excellent. Medical underlings - what a rotten status, so easy to pick-on and yet such fertile ground for planting some future blossom.
Barbara

~Mama Skates~ said...

praying hard along with ya!

xoxox,
sharon

Jackson's Blog said...

Sounds very promising! I know Dr. V too I think. He was there when we were. He saw Jack in aftercare the whole time. If you need anything at all, don't hesitate to email. We'll be praying for Trevor! It sounds like quite the trip. ;-) Love all the pictures! He's a cutie. We'll be thinking of you all!