Because I'm too lazy to write...

Austin has definitely been keeping us on our toes...hence, my brief update. To sum this week up, he's been pretty well over all. Seizures are still much lower than the norm (although they seem to fluctuate still), he's had huge bursts of the happys, sometimes followed by major crankys (which accounts for my being so lazy). Yesterday was one of those days. He was pissed all day, and like trying to learn your newborn, we were trying every trick in the book to soothe & please him. Today...giggles...smiles...calm.

Here's a catch up on photos.

The first time I got to hold my baby boy after surgery

Home sweet home

First time up and about. Immediate smiles :)

The new 'do. Just like Daddy!

Wanna see my food?! ;)

Home at last

Just a very quick update so I'm not leaving everyone hanging (those of you not following on facebook)...

We are home!

Austin is VERY hard to read right now. Like my mom said, I almost have to relearn all his cues and expressions...movements, noises, even seizures and so forth. What I used to know were seizures is out the window almost. I do know some are definitely seizures, but others are questionable. All are different overall. Some are far more subtle and others are...just different.

I've almost been scared to update because every time I do, something changes. We haven't had consistent highs or lows. It's been all over the board so far. I thought it may finally be safe to report about his day yesterday and our trip home...I was planning on doing that first thing this morning. Then, at 6 am the seizures started back up. He'd gone 36 hours without a "big" seizure or cluster. I can't even describe how that felt. I was still cautious because we'd seen him do that (not quite 36 hours) before and it immediately went downhill about 5 minutes after I updated all my family and friends. And I was right to hold off. He's had about 50 definite seizures today.

I know, I know, I know it's still early. Our doctors just keep stressing that. But, can you imagine how devastating it is to witness such a wonderful day with no major seizures (maybe 10 light twitches), to see him smile again, hear him belt out giggles, and just feel like what I just put him through may just be worth it? Then, to wake up to a day that seemed no different than any other before surgery -only today he's hurting, weak, and sporting a massive incision on his head as a reminder of what I just put him through...And for what? I'm not saying it won't improve. That's just how it felt this morning. That nothing had changed except a missing frontal lobe.

It has gradually improved as the day's gone by. There have been hours between seizures some of the time -still an improvement. He was so happy to get up and walk around (he's still weak so we're holding both hands). Hopefully our PT will get going next week.

So, we're not just dealing with recovery. We're dealing with seizures as well. A rollercoaster so to speak. I was about as realistic as I thought I could be going into this knowing we'd still possibly be dealing with seizures. It's never enough though. There's absolutely no way to not be devastated. There's just not.

We have to just wait it out. Concentrate on getting him well is priority. He's a very strong and determined kiddo. He's been through hell and back this past week, but he's doing amazingly well regaining his strength. His interaction is wonderful and I've never seen him laugh so much consistently where seizures weren't involved.

I will hopefully try to update again tomorrow and maybe get some new photos up. I still have a lot to say. We've all just been so tired and there's always one eye on Austin -even when he sleeps (he keeps waking up wanting to scratch his incision, so we've been trying to keep that under control).

Post-Op Photos (Days 2-3)

Consider yourself warned! The photos are actually not bad at all though. They will probably tug at your heart more than your stomach. But, it's a warning nonetheless...just in case you're eating. Or not prepared. I don't think it's bad at all really. Much cleaner than I expected, honestly.

Post-op

Day 2

The incision is much larger than I expected. They also shaved much more than I expected. A comb-over won't even work here. Neither will a mohawk. We're wishing we would have had them shave his whole head.

Finally holding (and wanting) his bottle.

Day 3

The swelling has increased, but it's actually not as bad as I thought it would be. He's a little puffier right now (no photo), but still not what I expected.

I just had to snap this one. He's been watching the TV for a couple hours here. He's never paid any attention to the TV for more than a couple minutes before. I'm not saying he's taken a liking to TV overnight, but it was something I've never seen and had to capture it to remember.

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 come...it'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.

Goodbye ICU, Hello 10th floor!

Just before they took him back for surgery

In ICU about 6 hrs post surgery

It's so good to finally be in a room now. We got up here around 10:30 last night -just when I thought all hope was lost and assumed we'd be down in ICU til morning. What a relief!

Austin has had quite a turnaround as well. He finally woke enough to actually suck a bottle and his paci. He also had a small amount of banana for breakfast too. I was really worried about it coming back up, but he was able to keep it down until it was time for his oral steroids. I can't imagine what that must taste like because he's vomited both times after getting it. As soon as he tastes it, he vomits.

So, I started the first two paragraphs earlier this morning. One of the neurologists came in while I working on this post, and four hours later, I'm finally getting back to it. There's been a few changes since then.

We are pleased to see him alert enough to take a bottle and able to eat...but...I just wish he could have kept it all down. He kept the banana down and the other fluids he was getting, but not his lunch. He'd only had a few bites and about 5 oz of water, but it came right back up. They gave him some Zofran and he was able to take his meds after that mixed in a little grape juice. So far so good.

He's also been having a few more twitches and jerks since then, and I'm afraid to say they are most likely seizures. The attending neuro actually witnessed one and she agreed.

They also came in and took the dressings off his head. The incision is much larger than I thought, but they are pleased with how it's looking overall. There is a little swelling, but it's not overwhelming at the moment. They warned me that today and tomorrow will probably be the worst of it. It seems to gradually getting puffier since this morning. When neurosurgery came in this morning, they said if all goes well, we may be getting discharged either tomorrow or Monday.

That was before the vomiting and discussion with neurology. They want to do an EEG Monday to get an idea of what's going on. It's a little late for anesthesia to still be having many effects. They are still not dramatic or prolonged seizures, mind you. We've seen zero of those. But, we still need to know what's happening. Our attending was not surprised and said she wouldn't be surprised if this was still going on two months from now (even though she said what's happening now doesn't necessarily reflect what will happen a month or two from now). She was present during surgery and did the readings from the electrode placement. There was still some spiking going on in areas that could not be touched because it was the motor area. However, even with that being said, they are still confident that the majority of Austin's problems were located in the areas that were removed. Even if he is still having seizures, she said she still considers this surgery to be successful. They weren't expecting seizure freedom, but rather major improvement, and they are confident this will be achieved.

I would love to share my thoughts on the subject, but I'm just emotionally drained. I'm afraid if I veer too far from the facts, I'll lose it. I knew I was doing a little too well yesterday and the day before. Reality hadn't hit yet. Today was the day I guess. Maybe it's because he's awake more now and I don't see my Austin. Elaine, you were right. When he was sleeping 99.9% of the time and had the dressings on his head, it just didn't seem as real. Now, my nerves are on overload. Trying to figure out what certain looks and reactions mean..whimpers, groans, and whines...movements...the vomiting...and every single time he looks into my eyes, I want to cry. I feel so guilty and afraid of what he may be thinking, and wondering if he thinks I failed him. I'm Mommy. I'm supposed to mean protection, love, and security to him. But, I was the last person he saw before he went to sleep in a safe world. And the first person he saw when he opened his eyes when the world he knew collapsed. Is this normal? I so hope that once he starts recovering a little more and gets back to himself, the guilt won't be so overwhelming. He has no clue we're only trying to help him.

Okay, I can't go anymore on that...ugh.

There's still so much to say...I'll try to get it posted soon. And some photos. Here's a couple for now.

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 noticeable..it 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.

This is Austins Nana. Austin is out of surgery and doing well. Holli is with Austin, of course and asked me to post a short update to let everyone know everything is fine. He is still in recovery but will be moved to ICU soon. Im sure Holli ill post the specifics as soon as she can.

Thanks everyone for all your prayers and support and encouragement!

Update: Surgery underway

Surgery began around 9:45 am. Updates are coming every 1-2 hrs. The last I heard was about 11:50 am (central time) and all was fine then.

I had originally planned to be more thorough in my posts, but I didn't realize I wouldn't want to think much. I'm trying to stay distracted and so far it's been easy since we have so many people here for us right now.

I will say..I got the scare of my life a couple hours ago. One of the doctors came out to talk to us. Asked to speak to us in private and took us to a private room. My. Heart. Nearly. Stopped. I wish he would have given me a heads up before scaring the life out of me. He was only wanting our consent to use leftover tissue for research. I think I shook for a good 20 minutes after that.

I'll try to update when I can. Battery is running low and I haven't found an outlet to charge yet.

I also wanted to thank everyone again for all the prayers and generosity. And also thanks Ken & Elaine for your advice and support. It really really helped and made a lot of sense. :)

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.

Thank you, Houston

It's no secret to anyone I know personally.

I HATE HOUSTON.

Hate it. With a passion.

Of all the cities in Texas, I hate Houston the most. The traffic, the air, you name, I don't like it. I hate that our hospital is there. I hate that we live in such a huge state that it's the closest one to us and it's still two hours away. Austin, Dallas, San Antonio, Ft Worth...hate the drive, don't mind the cities. I've never liked Houston. Even when it didn't spell S-E-I-Z-U-R-E-S to me. It was never a place I cared to visit. Now, after all we've been through there, it will probably be forever tainted in my mind. Reminding me of pain and lost dreams.

Back when I was younger and still had my passion for music, we'd go on a semi-regular basis for concerts. I hated it then, but it was tolerable. I was going for something I loved. I wouldn't even know where to begin to count the concerts I've been to there. Started going when I was 15 and continued until my crazy work hours and the weekday concerts ruined it in my 20's. I think the last time we tried to pull off a weeknight concert, we got in a wreck coming home. Ruined that. Okay, that's off topic. Anyway, my point is, so many people venture over there for all the city has to offer...Entertainment, great shopping, food, the zoo, museums. We never go for pleasure anymore. It's the last place we want to go.

Nope, we've made countless trips to Houston, but not for something we love -or even like. We go for something we loathe -the children's hospital. We go so that Austin can get testing done, blood drawn, and electrodes glued to his scalp. We have to go to hear doctors tell us he will probably never be a normal kid. So, no. We don't exactly get the urge too often to go for the heck of it. We hate it. And it's just too flippin' far and we're usually too exhausted to go for fun anyway. Having a special needs child will do that to a person.

But, for the first time in a loooong time, I'm so thankful to be going to Houston. I'm thankful for that two hour drive for once. So very very thankful we will be close enough to home that our family and friends can be there with us. I can't imagine the surgery being anywhere else. If it would have been in Detroit, we would likely be going alone. I know some of my family will be heading over Wednesday evening and possibly some of Chad's. My best friend is even planning on flying in from Dallas to be there with us. I couldn't ask for a better support system to be with us through this (you beat me to it, Ken -lol).

So, yeah, even though I'm dreading this upcoming trip, having the most special people in my life surrounding us as we endure this most excruciating ordeal, makes the thought of Houston seem...not so bad this time around.

And although the gadgets will be a nice distraction, nothing can replace the need for emotional support and encouragement.

Eight days...

The rundown...

We are finally finally all scheduled and set for next week. Here's how it will play out..

We'll leave Tuesday for the first of three appointments to take place that day:

Tuesday, January 11
11:30 am
Clinic visit with neurosurgeon to discuss details of surgery and ask questions

1:30 pm
MRI-images to be used during surgery

3:00 pm
Pre-op -Labs and medical history will be taken in preparation for the surgery


We don't have anything scheduled for Wednesday at the moment. We'll most likely stay in Houston though just to keep us from driving back and forth two days in a row.


Thursday, January 13
6:00 am
Arrive for surgery

8:00 am
Surgery


Of course, there are many more details to come. Details of the surgery itself and duration, ICU time, and recovery time are some of the specifics I will get during our clinic visit next Tuesday. I was told that the surgery is expected to last about 8 hours (but after the callosotomy debate, I'm not sure now), ICU for at least 24 hrs, and inpatient recovery 3-5 days. I'm still uncertain about the callosotomy, so depending on which way it goes, all this could change. There will be mapping prior to surgery, however, I don't think they are doing grids. Again, all this will be covered on Tuesday.

My dear and generous husband has me ready to go as far as gadgets to keep me occupied and in touch. Since Austin was born, I've been quite the homebody -not needing anything more than your basic cell phone. I didn't even want a data package on my phone when my upgrade came a few months back. As long as I had my desktop, I was happy. Then, we started really imagining the possibility of surgery, and I told him a laptop would helpful. I think it took him a while to understand my deep need to update and to document this, because he kept saying I have a cell phone to keep everyone up to date...Maybe it was just his bluff, because he surprised me with a netbook and a new mp3 player with WiFi for Christmas! Not only that, my mom also contributed to my electronic stash with a GPS -also with WiFi and internet. So...I'm covered in that department! I have no excuse not to update now. I'm not sure how often I will be able to, but I will definitely make sure someone does. And like I said, we have nothing on Wednesday, so I should have time to at least cover our discussion with the neurosurgeon thoroughly.

By the way, I cannot believe that we were able to get all those appointments on the same day. And I even found out a day early...without having to call them! That totally blew my mind. Now, Chad can work that Monday to cover the health insurance for the week. I can finally breathe about that! :)

Nightline on ABC

Did anyone happen to catch the Nightline episode on ABC Thursday night?

Mom called me that evening to tell me a friend of hers from church called to let her know they were doing a story on the same surgery Austin was having. I quickly learned it wasn't the same surgery, but still one I've read about numerous times. I meant to post this sooner, but you know how it goes. I must have seen something shiny and got distracted (as Chad likes to say about my short term memory).

Anyway, it was to treat epilepsy seizures (Infantile Spasms even), but it's a more invasive surgery called a hemispherectomy. I did assume for a long time that if Austin ever was a candidate for surgery, this would most likely be the one he would have. Mainly because statistically speaking, it's usually the most successful for treating seizures once the correct side of the brain can be determined (meaning the hemisphere that contains the focus for the seizures.).

We've followed several kiddos on blogger that have had this procedure done (well, close enough, I think I've only followed kids that have had the subtotal hemispherectomy -where motor function is spared, preventing permanent paralysis on the opposite side of the body.).

This was still interesting, because it's not every day that I see the major networks air stories on epilepsy surgery...much less utter the words Infantile Spasms.

Watch it here...