I knew going in, May was going to be a real bitch.
Not THAT May...the MONTH of May. I'm sure Aunt May is never, ever bitchy. Well...not any MORE anyway...
Thankfully, now, the month is over, and it is time to move into June. While May held mostly a state of Limbo for us, with some exceptions (of course), June beckons with hope, plans and momentum.
This is THE week.
The week where Jennifer, Bennett and I (with Carter hanging back with the grandparents) head up to Detroit to see Dr. Yoda. It all begins in the afternoon tomorrow, earlier than we thought actually, around 3-ish, when we depart for the Motor City.
Here is The Plan. I am keeping it basic, cause you KNOW I am gonna be doing a LOT of writing this week. There will be a ton of down time.
Tuesday Afternoon/Evening: Arrive Detroit via automobile and check into downtown Detroit hotel.
Wednesday Morning through Thursday Morning: Admit Bennett as patient to the hospital, begin 24 hour video-monitored EEG. This EEG requires an awake parent for the entire time. Shifts will be taken to allow one of us to rest.
Open the pod bay doors please, HAL...
Thursday Morning: Bennett has a PET Scan performed. PET stands for Positron Emission Tomography and it allows physicians to measure the body's abnormal molecular cell activity to detect things like Cancer, Brain Disorders and Heart Disease. For this he is injected with a radioactive substance, knocked unconscious with medication and shoved into one of those funky tubes.
Thursday Afternoon: After Bennett is monitored to make sure there are no ill effects from the medicines and PET scan, he is released, we take him back to the hotel and HOPEFULLY get a chance to get some sleep. He will probably at this point be wide awake and his parents will be WIPED OUT.
Friday Afternoon: At around one o'clock we meet with Dr. Yoda to discuss the results of the testing. I'm guessing we hit the road at around 2:30 or 3:00 in the afternoon.
What is the purpose of the visit? What are we hoping to achieve here? I think it is very important to summarize the goal, so that it is clear in mind.
We hope to have Dr. Yoda evaluate Bennett's condition and confirm or challenge the local diagnosis of Focal Cortical Dysplasia with Symptomatic Infantile Spasms, in the hopes of determining what the best course of action is for the treatment of his condition.
It's that simple really. If he confirms the diagnosis, and with that confirmation determines that the affected brain tissue is something that can be excised, we want to know how to proceed with any additional testing that might be needed to plan a surgery and make it happen. If no additional testing is needed, then we'll figure out when and where to try and have the surgery.
Note the lack of hesitation in that last paragraph. People often tell me what a tough choice Jen and I will have to make regarding surgery. To me, it actually would be the EASIEST decision to make in all of this crazy mixed up scenario. Why? Because everything I have seen about Focal Cortical Dysplasia leads me to believe that removal of the affected tissue is the NUMBER ONE option that leads to the best possible results for Bennett.
Now...if Dr. Yoda determines that the local diagnosis is not correct, or if he finds something in Bennett's head that we have missed here, we'll deal with that when the time comes. We still have a heavy hitter medication that we have not used, but plan to start immediately following this series of evaluations, regardless of what the tests confirm or refute.
There's no need, NONE, to think about the 'What-If's' right now regarding Bennett's brain, or anyone else's for that matter.
As far as I am concerned, the diagnosis is what we think it is and it's location is where we think it is.
The Bears are who we THOUGHT they were!
Maybe I have packed up my bags and moved to the state of Denial, but I really do believe the local diagnosis. Even though we have not received the results of any genetic testing (C'MON...THREE MONTHS AND STILL NO RESULTS ARE YOU FUCKING KIDDING ME?) this is how I intend to proceed mentally.
It's the only way, quite frankly, to make it through this week.
Don't let ANYBODY fool you, this is hard.
I have a surge of energy and hope today, as I write this, but that veneer can crack at ANY time. I am going to try very hard to make sure that does not happen. As it stands now, I am going to try to germinate this feeling, grow it, toss it in my suitcase and take it with me. I am going to do my VERY BEST to be the MOST POSITIVE I CAN POSSIBLY BE in this very difficult situation. For my son, for my wife, I am going to give it everything I have.
Yesterday early evening, Bennett had an explosive set of seizures. And I mean just gut-wrenchingly tough to watch. I...reacted, you could say.
Maybe because it was the end of the weekend, and I had seen more than the usual amount of seizure clusters, maybe it was the emotional roller coaster I rode while following the blogs about Sophie's surgery, or maybe I was just tired.
But I fuggin' LOST it.
Cried, sobbed, like a baby for, I dunno, maybe 10 minutes. Kept trying to pull it in, came right back out. The kind of crying where your head really hurts afterwards. your nose is all stuffed up and you look like Rocky Balboa in the eyes, all puffy and swollen. Yo Adrian...I'm a PUSSY!!!
Freaked the shit out of Jen, I'll tell you that. Not that she hasn't seen it before, she's seen that happen to me probably 5 times previously. Carter thankfully was occupied in the other room with Beverly Hills Chihuahua, and Bennett...well, he was having seizures so I guess he missed seeing his Daddy come apart right in front of him.
BUT...gift horse. I NEEDED IT.
After it was over, I felt SO much better. Carried that into today, gonna try and keep carrying it all week. Maybe I can. This blog is certainly upbeat all things considered, so either I am fairly well adjusted right now OR you are witnessing the beginning of someone who is teetering on the brink of the chasm that is TOTAL MADNESS.
I'll keep you posted. ;)