Friday, January 14, 2011

Houston, We have an update...finally!

So very sorry for the delay in updates. I really meant to check in sooner. I never thought we'd still be in ICU at this point and completely drained beyond imaginable. Yes, a full 24+ hours after surgery was finished, we're still in ICU. Not because of Austin's condition but because of the lack of beds on the neurology floor. We were actually approved to move up there this morning, but we've been waiting for a bed to open up. We even waited to get into ICU from recovery.

Anyway, I know you just want me to hurry up and get on with how everything's going, right? I have soooo much I want to jam in here, but not a lot of time. Well, so far, so good. Austin doesn't seem to be in much pain. He's very very groggy. Still sleeping about 99% of the time. He does wake up, but he's really only in and out. We've gotten to hear a few raspberries, and he's been quite feisty lately...letting everyone know when he wants to be left alone. Swelling hasn't really started yet. His left side is a little puffy, but not super will likely set in tomorrow or the day after from what they say.

Here's what the neurosurgeon had to say (as best as I can remember -he got me a little worked up -more on that later).. It went really really well. Mapping went smoothly, electrode placement worked out nicely also. One of the first things he said was that he thinks we got most of the seizures. Remember what I said in an earlier post about the supplementary motor area causing temporary paralysis? Well, we lucked out. There was a chance that it would, and also a chance that it wouldn't. It most definitely did not! He's moving that side with no problems whatsoever! We dodged a setback there.. He also said that it's still left to be determined whether or not we are dealing with the "tip of the iceberg". Only time will tell. He implied that if seizures persist badly, we are still not at the end of the road. They did not do the corpus callosotomy, so he said that can be done later on if needed. Also, he said not to freak if we see seizures after surgery -even though he never gave me hopes that Austin would be seizure free from this surgery. But, he also added...don't celebrate if you don't see any either. It's just too soon to tell right now. A brain surgery can provoke a seizure in someone who's never had one in their life. There's just a lot going on in there right now.

So have we seen any? I can't say with complete confidence one way or another. I've always had a keen eye for those things, but I'm not so sure what's going on right now. It started in recovery after the surgery. Twitches and jerks. Quite a few of them. I kept my cool and didn't lose it even though my heart was crying. And this morning when he had four of what I thought were mild looking body jerks -not just jerks of the hand or leg like I was seeing last night. But....we've only seen about six of those today...along with the occasional jerk of the leg or arm (which is tapering off by the way). About 6 pm, our regular epilepsy doctor (who I haven't seen in forever and who was out of town yesterday but closely followed the surgery) stopped in to check up on us. He told me everything looked really good. He also filled me in on the jerks and twitches (which I'm surprised no one else did). He said it was most likely from the anaesthesia. Apparently that is very common after being under anesthesia for so long. Austin happened to have one of the body jerks that I just knew was a seizure. However, he felt fairly confident that was not a seizure. Of course, no one can be certain without an EEG, but it still made me feel soooo much better. So, if that is the case, and that was not a seizure after all, he hasn't had any that I have seen. No eye rolling. No arms way up seizures, no head swaying or tonics. No facial space outs. No prolonged body tensing.

We are encouraged..but still cautious of course. Austin's doctors didn't expect 100% seizure freedom. But, we are very optimistic that if he's not seizure free he will be much much better. Considering all his little body has been through...I'm very happy with how he's doing in that area. Normally, just waking up will bring on a hard set of seizures. Or a fever (which he's had since last night). Not to mention the surgery itself. So, even if those were seizures we were seeing, it's about 95% better than it was two days ago. And under the circumstances where he is at such a high risk to have seizures...very encouraging.

I do have so much more to say, but I know his Nana needs a break. Chad went home with his parents to get his truck and will be coming back first thing in the morning. He needed some rest too. He took the night shift for me last night and was functioning on about 5 hours of sleep in the last 48. So it's just the two of us here with him until tomorrow. I have some photos to post, but hopefully I can get around to that later tonight or tomorrow sometime.


devon said...

glad to hear things are going well so far! Still lifting you guys up!

Liz said...

Thanks so much for the update. Everything sounds good so far! Hope you guys get a Neuro bed soon, those ICU rooms make you feel crazy after a while.

Sophie's Story by Elaine said...

This all sounds so promising. So hopeful. Thank you so much for the update. I've been constantly thinking about you all.

I know every situation is different. But I feel the need to tell you this. For us, Day 2 and Day 3 post-op were hard. Very emotional. Sophie was really out of it. She seemed blank inside. It was some of the hardest moments in my life to see her like that. I was scared that I lost her. But around Day 4 and Day 5, she really came around. I just want to prepare you in case the same thing happens with Austin.

I am so excited for him. For his future. It might seem odd to say this to someone whose son just had brain surgery...but I feel such an inner joy for Austin, for you, for your whole family.

happy's mommy said...

Oh Holli...I'm just SO happy to hear from you! I told Elaine via email that I was just too scared to ask...but knowing you couldn't have your phone on to update makes sense. And makes me laugh. I'm such a drama prone girl!

Isn't it weird to not be sure what you're seeing are seizures? After noticing the most mild, missable kinds for so long? But it's true...just the way their bodies move after the surgery is different. And all the drugs coming out of their systems. It's all so...different.

Anyway...I'm hoping that it was just anesthesia twitching and that Austin makes a FULL SEIZURE FREE recovery!



blogzilly said...

You are doing everything you need to be doing exactly the way you need to be doing it.

And well.

Your fears are justified, your emotional highs and lows expected. The questions valid, the hopes well founded.

Stay rested, stay positive, and stay focused on the goal...getting Austin healed and out of the hospital. Everything else is to be dealt with afterward. Worry not about the future or prognosis or down the road or anything of the sort. Take it a step at a time.

Proud of you. I think everyone is.

And he's doing great.