Friday, July 22, 2011

Three little words

(I'm going to copy and paste this one to my fb because I still haven't had the patience to figure out how to link to my feed. That and I don't want to write it twice. lol)

The dust has finally settled in the Burnett household. Back to business as usual after returning home from Detroit last Friday night. I knew it would take a few days to get on here with a recap, but I never intended to drag it out a week. Granddad, I'm sorry I didn't update sooner. I know you check in on here for news and Austin happenings. Unfortunately, I've always had issues with procrastination!

There's really not much to tell. We had the 24 hr EEG, AMT PET scan the following day, and the meeting with Dr. C the day after that. Still no localization, only structural abnormalities depicted in what remains of his left frontal lobe on MRI scan. Not enough. In fact, even with sound imaging, seizure appearance/behavior, he thinks it's bilateral. Not good at all. Especially given the fact he's already undergone surgery. (He mentioned that abnormalities on MRI are likely only the tip of the iceburg -I've heard that one before. He feels there are more that just aren't showing up yet.)

Why he thinks this? Refer to blog post title. Those three little words. Is he talking? Our response: No. Taking his age into consideration, he strongly feels that if he had a normal functioning hemisphere, it would have picked up speech by now. say I'm a little annoyed is an understatement. After months of email correspondence back and forth, that very simple question was never asked. He reviewed images, EEGs, seizure videos, etc. Never once thought to ask me this question that he emphasized so much as a HUGE factor. Instead, he eagerly told us "they did not take out enough" and "I think we can help, could you come up here for more testing?"...I even asked him why he thought that before making arrangements to fly out there. We'd been through the disappointment once before after much optimism from him. I wanted more concrete evidence this time around that suggested the trip would be worthwhile.

I was very impressed by the hospital staff and even him before our Friday appointment. While we were waiting in the PET center for the scan on Thursday, he walked through and immediately recognized us from our prior visit over two years ago. Very impressive considering our own doctor doesn't seem to recognize us (or just never bothers to acknowledge us) after seeing him for over two years. So, when he came in on Friday, he knew we'd been there before and had flown across the country once again desperately seeking his advice. Not an easy task with a developmentally delayed toddler with daily seizures -physically or financially. He was very distracted throughout the appointment, and I never felt like he was interested in anything I had to say or ask. I got the impression he didn't have a surgical candidate so we were wasting his time.

I left Detroit once again devastated. Not just because there is little left in terms of intervention for us to do to help our son, but also because I felt quite embarrassed. He had a tone about him that implied we were irresponsibly chasing surgery that we had not thought through adequately. He actually asked me (very condescendingly, I might add), "and you want more surgery for him? I would say noooo! He's not talking!" I wanted to begin sobbing that very moment. But...I somehow managed to regain composure and explain to him the series of events that led us there. The doctors telling us there were abnormal areas left, HIM telling us there were abnormal areas left and they could help, absolutely non-mistakable right sided seizures, our email correspondence, etc. All this while he's reading his pager. Then, with me on the verge of a breakdown, fighting back the tears after that explanation, he says, "Okay, great, well sorry we didn't have better news. Have a safe flight back to Texas." I'm in complete shock at this moment. Really? It was as if he hadn't listened to a word I'd said. He was just eager to get out of there and wrap up the conversation. Very disappointing, especially considering how patient, compassionate, and thorough he was the first time we'd seen him two years ago.

Really the only encouraging input we got from him was his recommendation to give ACTH another try. He explained that (even though it failed miserably the first time around) his brain has aged and matured, he's had surgery, and the fact that the post surgery steroid seemed to make a difference, that it would be worth a shot to try it again. Encouraging yet dreadful to even fathom going through that again. More on that later.

That's pretty much it. We flew 2000 miles, spent thousands of dollars, and put our hearts on the line again for him to tell us what could have been easily discussed via email. If he put SO much emphasis on that one factor, why not get that information before asking us to come out for testing? We didn't beg him to see us because we were dying for our son to have more brain surgery. We asked his opinion because we were desperate to help our baby boy. Maybe I'm being overly sensitive given the fact we didn't get the news we were hoping for, but still. If no speech was that big of a red flag, why not ask me that to begin with?

Wednesday, July 13, 2011

In Detroit

We're about 10 1/2 hours into Austin's 24 (or less) hr EEG. I honestly was beginning to think I was never going to be able to sit still. We have been going practically nonstop since yesterday morning. Note to self: Never. EVER. Book such a late flight again. In our defense though, we really thought it was logical that Chad could maybe squeeze in half a day at work, come home, get showered and packed, drive the 2 hrs to Houston, catch the nearly 3 hr flight, arrive at 11pm, rent a car, and drive to the hotel, and actually not want to die. HA! We threw out the plan for him to work, but kept the late flight plan. Not again. So, needless to say, we're beat. We finally got settled in at the hotel by 2 am, got up and checked out and headed straight here to the hospital for overnight EEG. Hook up went well, it's a totally different experience than TCH. They don't use the superglue-like goop (we shaved his hair for nothing, because I totally forgot), and they have softer tipped pencils for marking (trust me, that makes a HUGE difference). In Houston, I swear they're nearly drawing blood with their pencils. On the downside though, the camera doesn't follow him around the room, so he's pretty much confined to bed. Not a big hit with the A-man! Also, unlike at TCH, there must be one parent awake at all times to watch for seizure activity. THE biggest downside! And one of the only things I can say I miss about getting them done in Houston. They let us all sleep!!! And when your kid is getting more tests done the following day...that's a big deal! I think I'm also spoiled to the private rooms at TCH too. ;)

He's finally resting now. Hooked up for 10 hrs before he would actually go to sleep. And after the crazy night last night...I can't believe it took him so long to go to sleep. And it never fails, about 15 minutes into real, honest to goodness sleep -the first wink of sleep for him in 12 hours- they come to get vitals!!! I talked her out of the blood pressure, he would be blowing raspberries and trying to get up as I'm typing otherwise because no doubt that would've been a definite wake up. lol

So, the plan is...get down to PET scan around noon tomorrow and hopefully back to hotel by 4 or 5pm for the night. We'll see Dr. C Friday at 1pm and will be flying out the same evening. What were we thinking??? Uh, saving money...not our sanity! lol

By the way, not even thinking about getting into what my expectations are for our visit here...besides the obvious of getting some answers. The less I talk about it, the easier I'm handling the wait and unknown until Friday.