We did get discharged today though. Bennett is no longer enduring EEG Hell. However, Bennett's 'review' and presentation of all his test results and evaluations and so on was, is, scheduled officially for August 25th (yeah I know FUCKING HELL I hate more MOTHERFUCKING waiting but more on that later).
One piece of the puzzle that they want to have completed, the last piece, is a Neuro-Psych Evaluation. Here, they do that before they do a surgical presentation. Don't do it everywhere, here they do. MAINLY because of his age, they say, they want to get a baseline study down of who he is and what he does before they go cutting away at his melon.
Soonest we can get an appointment for that? Mid September. Yeah, that's exactly what I said.
Anyway, we check out of the hotel, or Jen does after going there to shower (I stay in the hospital room with Bennett) and she makes the arrangements to have all the bags I packed last night taken down and loaded in the car. We'll pick the car up after Bennett is officially discharged.
Jen comes back, we get the leads off of Bennett, hang out. Waiting, waiting, waiting, you know how discharges go. Then the nurse comes in and has news.
Anyway...somebody somewhere pulled a string. They got us in for a Neuro-Psych eval tomorrow instead of September. Someone called in a favor. No way are we gonna NOT take it, so we agreed to it, discharged from the hospital, carried our hospital bags and Bennett (we forgot his stroller, I may have forgotten to mention that) the 2 blocks over to the hotel.
Then asked them to check back IN to the place.
Same size room. Dramatically different rate (boy people can really fuck people in need over, never ceases to amaze me).
So here I sit, typing, while Jen takes a nap with the boy.
After getting in to this room, it isn't like we can really unpack, we just sort of unload the bare minimum of what we need. And I overpacked, 2 extra days worth, just in case. Jen packs per day, never overpacks. I have clean clothes to wear, she does not.
But then we realize something. Hey, they started Bennett on a medication two days ago, wrote us a scrip, and we don't have any of this medication and are not on our way back home to any kind of pharmacy. OOPS.
SO...pay another 10 bucks to access the internet at this hotel so I can see if there is a Meijer or Wal-Mart nearby. I know there is a CVS, but hell, since I have to have the car pulled out of the garage (they only do valet parking) maybe we can find a place where we can also buy a 15 dollar stroller. Be worth it rather than carrying Bennett across the Cleveland Clinic Campus. And Jen can at least buy a T-shirt or something that's clean.
Found one, wrote the directions down, headed out. I think it's bullshit I gotta spend 16 dollars a day to park my car in this hotel's fucking garage since I am paying for a room, But THEN the valet guys expect a tip coming AND going? Ridiculous.
We're back now obviously. Jen is super-pooped. Bennett is napping now too, but holy crap he was giggly and playful and jabbery all afternoon, SO happy to have that crap off his head. Of course, all the glue goop and red pen marks and stuff make him look like he is starring in a sequel to Outbreak, but he's happy, and that is important.
To me, anyways.
So that's our story for today. I haven't had much of a chance to respond to any comments in earlier posts, answer e-mails, etc., so sorry about that. Hell, my work is all backed up and I guarantee my house stinks, I probably left some dirty dishes in the sink when we were scrambling to get out of there last week. And we have my parents coming in at week's end and need to get some stuff ready for that.
But how in the world could we say no to an appointment tomorrow? We couldn't. Not if it meant putting the surgical presentation into September. August 25th is bad enough.
Which brings me back to the waiting thing. I get that things take time, I get that there are other kids ahead of us in line. But I now have to basically go yet another month before we might get another step further in this process. You were right Sinead, you were so damn right. So another month of watching Bennett seize, trying a new, dopey style medication, weaning another...just more of the same.
I'll get through it, doesn't mean I won't bitch about it. And yes I know, of COURSE it could be worse, could always be worse. And believe me...I do appreciate where we are, I really do.
So that's the story for today, what time is it now, nearly 6? This day felt particularly long. I'll probably do a full recap at some point cause these updates have been very rambly, but gonna sign off for now and maybe watch some TV. I am FRIED.
Oh and sorry no new pics...my external hard drive is in one of the suitcases and I don't want to go digging for it.