Wednesday, January 12, 2011

Now we wait

First off, I'm overwhelmed at the outpouring of support from everyone. All the calls, texts, emails, facebook posts. We truly appreciate it so much. You all are wonderful. :)

I don't have much time, Austin's napping with his daddy and these naps are usually very short. I've been meaning to get on here and give a rundown of our plans for tomorrow, expectations, and so forth.

First, our visit with Dr. Yoshor was surprisingly short this time. I won't get into interpreting what I took away from our discussion, just a short overview of what was said. Austin will have the left frontal lobectomy but no corpus callosotomy. They met again and reviewed the scans once more and decided it just isn't necessary at the moment. Also, the portion to removed from his frontal lobe is a very large one. The majority is what he said. Their philosophy is get it all the first time. Although he did mention his main concern is what he described as "the tip of the iceberg". I won't get into specifics right this minute, but it is possible that there is more of the dysplasia that is not showing up on the MRI. However, they were truly impressed with the images on MrI, which is why it was unanimously decided that surgery is his best option. They will be leaving the main motor area intact, however, they will have to remove what is called the supplementary motor area. He told us that this may cause a temporary paralysis on his right side. But, as long as the main motor area is spared, the supplementary can be removed without permanent damage or deficit. Language? This is a major uncertainty. He reassured us that Austin being nonverbal is most likely because of the severe abnormalities in his left frontal lobe. The fact that they will be operating at this age is a plus, however, language may or may not come.

Now, the expectations. He did not want to give us false hopes of seizure freedom and major cognitive improvement. He did say, though, that they are hoping for major seizure reduction and some cognitive development. We go back to the "tip of the iceberg" thing here. It all just depends on if this is Austin's sole problem. He said it is clearly abnormal. Very abnormal. It needs to come out regardless because it is not functioning properly. This may or may not make a tremendous difference. These were not the types of things I wanted to hear two days before, but I pretty much asked him point blank. I needed realistic expectations. I can't deal with complete devastation again.

So, that's the gist of it. Surgery will take place tomorrow morning around 8 am. We will arrive at 6 for all the preparations and such. It will take 4-6 hrs (not the 8 I was originally told). I have lots of friends and family making the trip down tonight. Can't wait to see everyone. Actually, my best friend got into town (and is staying in this very same hotel) on Monday, but we have yet to get together. Hoping she gets her work done and can come by for a much needed visit. We're trying to lay low today. No major plans. Just rest.

One more thing, if you're the praying type, please PLEASE say a quick one today that Austin isn't coming down with anything. I'm completely freaking that he may be catching a cold. Not now!! Please not now!! No major symptoms, just a dry cough here and there. I'm praying it's nothing but his way of telling me to back off (he tends to do that when he's fussy). Sickness is the LAST thing we need.

I'll will most definitely try to keep the updates coming. I'm waiting right now to hear back from neurosurgeon's office about the labs he had done yesterday. They're just checking to make sure he's healthy for the surgery and that all organs are on the up and up. Then we'll have the official green light to show up in the morning.


blogzilly said...

This is the one instance where I don't have to say 'I can't imagine what you must be thinking/feeling'. I can imagine it. I've been there.

I get what you mean about the expectations questions. You are right to want to have some. But here's the thing. None of it really matters. Your best bet, your BEST bet, honestly, something from someone who has been down this road, is to have NONE at all.

That is the best advice I can possibly give you right now. The best advice that anyone can give you right now.

In the words of Bruce Lee:

'Don't get set into one form, adapt it and build your own, and let it grow, be like water. Empty your mind, be formless, shapeless — like water. Now you put water in a cup, it becomes the cup; You put water into a bottle it becomes the bottle; You put it in a teapot it becomes the teapot. Now water can flow or it can crash. Be water, my friend.'

Sophie's Story by Elaine said...

Exactly what Ken said.

I am so glad that you have a great support system there with you. Up until the moment I had to kiss her goodbye for surgery, I was in a sense of panic on the inside just trying to hold it all together. But the moment I walked out of the OR, everything went calm. I felt at peace. I hope you feel the same way. (((((HUGS)))))) I am here for you night and day...even if it is 2am. Love you.

aRtcHixX said...

I've always told you that I don't know hoe you Mothers do it - superwomen you gals are!
I also can't imagine what you are feeling. I wish I could help more - do more - pray more - say more, but just know that Austin, you, Chad & your entire family are being carried on the wings of so much love and support that I hope it eases just a little of the burden that I imagine weighs on your heart.
My heart aches for Austin and for you ..... but even though you are tired and feel beaten down - your little boy should be so proud of his parents & family!
You have moved moutains for him!!
My prayers & love follow you always!
Love you to the Moon and back!