Thursday, November 4, 2010

Waiting

It's been months since my last post. It certainly hasn't been because I've been super busy. I just haven't wanted to to be completely honest. I really haven't had the desire to sort through everything we've been dealing with -in an emotional sense. Probably because I still don't even know myself what I feel. My facebook friends have an idea what's been going on for the last few months, and they probably also know I've become the "crazy dog lady" too lately...lol. What a distraction that has been. Much much needed. I needed something to take my mind off researching seizures and resection surgeries to keep me from going nuts.

It hasn't been working for the last few days. I just entered Day 3 of waiting on "the call". How a doctor can purposely postpone one of the most anticipated phone calls a parent can get is beyond me. I'm amazed at his audacity to make me wait like this. And for those of you scratching your heads because I haven't been in touch...

I'm waiting to hear whether or not Austin is a surgical candidate for epilepsy surgery. Every single time the phone rings, I start trembling...my head spins and I feel nauseous. This makes the fourth time I've waited on a call like this in the past month and a half. First for the PET scan results, then the first surgical committee meeting, then the 3T MRI...Now the second surgical board meeting. Each and every time I thought we would get huge info and some type of direction.

Our lives have pretty much been on hold this entire time. Not knowing which way to go because everything is dependent on this call. And while I wait, I imagine both scenarios in my mind. Scared to death either way. Will I really be happy if he says they recommend surgery? Not really. I never ever wanted this. Relieved maybe...not happy. Will I be devastated if they say no? I don't know. I do know we will get a second opinion, but I honestly don't know how I will feel either way.

So, this is exactly why I haven't been posting. My emotions are swirling and it's been so much easier to let myself be distracted because until I know what their decision was Tuesday morning...there's just nothing. No news, nothing but nerves and confusion.

And just to recap all the evidence we do have to support Austin's (possible) left sided focus:

MRI with suggested dysplasia left frontal lobe (Feb 10)
48 hr EEG with slightly more activity in left hemisphere (Sept 10)
3T MRI with suggested dysplasia left frontal lobe (Oct10)
Early left hand preference with slight right sided hemiparesis (noticed Sept 08 -ongoing)
Visible right sided seizures (videotaped July '10)
Right hand irritation (May 08 -present)

Looks kind of convincing, right?

Not supporting this are FDG & FMZ PET scans that show right sided abnormalities (March 09)
That coupled with the fact that all the other evidence is subjective. Nothing is a clear indication or very well defined. It can all be interpreted differently depending on who is viewing it. THAT's why I'm a wreck. Because it could really and truly go either way.

Maybe we'll find out today...maybe.

3 comments:

kirstenpetree said...

add me on facebook...kirsten petree

JSmith5780 said...

Anxious to hear. I'll keep an eye out on FB.

happy's mommy said...

For what it's worth...I love you, my crazy dog lady friend! And I wish I could make him call RIGHT NOW. Waiting is absolutely the hardest part!

Speaking of...Trevy's been awake and waiting up in his crib for about 30 minutes now. I suppose I should pick my boot off this chair and go tend to him. Before he figures out how to climb out...

...danielle