Sunday, January 16, 2011

Post-op -Day 3

I have to start by saying today started as one of the worst days of my life. Mom (aka Nana) took the night shift last night so Chad and I could go get rest at the hotel. I came back this morning fully rested and refreshed...ready to take on anything. When I got here and found out he'd had not one but two nasty clusters plus 4-5 of his "holding" seizures, I thought someone cut out my heart. He'd been showing more pain symptoms too. I just kept thinking to myself...all of this he's going through...for nothing. For nothing. I wanted to crawl in a ball and sob on the floor like a baby.

We also had a lengthy chat with the on call neurologist -the same one from yesterday. She told us that although we can't tell what the outcome will be for some time, his chances of seizure freedom are obviously very low considering all the post op seizures he's been having. That doesn't necessarily mean there's not room for more improvement to's just highly unlikely at this point to expect zero seizures in the future from this surgery. And even though I so desperately wanted that, I was warned that chances were slim earlier on. She also mentioned that it takes a good 4-6 months to know the true effect of the surgery. We will have a very good idea earlier, but seizures have the possibility to increase or decrease over this time frame. I was aware of that too...just from following our IS friends through their battles and surgeries. Even with that being said, she also told us that seizures this early on post-operative, are generally written off.

So, we started this day with many burdens. Many fears weighing on our minds. I like to be the hopeful type, but I don't like getting set up for disappointment either. I thought it more realistic to not expect seizure freedom, but to secretly hope for it. To not freak when I saw seizures and not to celebrate when I didn't (thanks to our neurosurgeon's advice). To be water (thanks to Ken's advice).

I'm not saying it worked entirely, but I tried. I'm still trying.

Austin showed me today why this is so important. Each day has been so very different. There have been ups and downs every day and all in different areas. One day there are very few seizures, but no other notable improvements. The next, there are worrisome seizures, but huge strides in alertness and gained strength. Today started absolutely terrible. Discouraging and depressing. But now? Tonight at 10:30? Austin has been calmly resting...awake. Watching TV, eating real food, drinking bottle after bottle, functioning toys, making wonderful eye contact, and having very few seizures. I've seen less than 10 all day since the awful morning cluster my mom reported. And they weren't the typical spasms or tonics I usually see. Small twitches, but seizures nonetheless. But I haven't seem him have this few seizures while being awake for so long in...almost 3 years.

I'm not making assumptions. Believe me, I learned NOT to do that. And I'm not celebrating either. But, I am taking it in for what it is. My son has been awake for hours today and is not seizing like crazy. Even if it's only for today, I got to see him get some relief for a change.

And that has somehow made this excruciating experience of seeing him in this state bearable. It still completely sucks and breaks my heart to see him not wanting to move (he's ALWAYS been a mover -ALWAYS). But, it makes me think I can still take on tomorrow.

And the next day. And the day after that. I learned today that each day can be completely different.


happy's mommy said...

I tried to be realistic too. About seizure freedom. I just think it's smart...but then maybe I've got it all wrong. Either way...even with all the prepping my heart that we'd always be dealing with seizures. Even with all the telling others we'd always be dealing with seizures. still affects me.

But then Trevy will do something (like watch tv for more than two seconds in a row) that will amaze me...and I know...I KNOW...we made the right choice. And seizures or not...he's my amazing, extraordinary son. And we're growing together...into our Purpose...


Enough sappy from me. Hug and prayers...I happen to think he looks BEAUTIFUL bald! Truly. And his scar is SO smooth. To those outside our world it'll probably sound morbid...but I think the scar is beautiful too. Trevy's was a hack job...they obviously let a newbie crack his skull. But still I touch it often. And it is beautiful. Because he is beautiful...

Hoping to day is easier...


aRtcHixX said...

I love the advice of being like water also.
Being able to peek inside your world - a little deeper into the IS journey with your experiences via your blog is such a gift! I can't even begin to imagine your moment to moment struggles but I am glad that for this moment in time you are able to ride the roller coaster for a little longer.
I say that because I can only imagine how difficult riding those waves or the roller coaster can get in the midst of your son going through difficult transitions new things post surgery, but to be able to read that you had some sparks of peace - and that you saw some in Austin as well is such a blessing!
It's sometimes hard to take it day by day or even moment by moment but when those waves of peace come every now and again - it makes the rough patches ever so slightly easier to ride out.
I'm so incredibly proud of you and always amazed by your quiet strength and courage! I am so grateful to have you in my life and to be able to call you my friend!!
I also can't wait to give little man a hug!