We had that all important appointment with our epilepsy specialist this past Friday. Unfortunately, I didn't get the news I wanted to hear.
We talked past, present, and future. I did get the information I was seeking, just not what I was wanting.
The first burning question was WHY WHY WHY things aren't playing out the way they had originally thought immediately after surgery.
The answer?
Let me start by saying that we are dealing with lesional epilepsy. There was a clear lesion on Austin's last three MRI scans. In cases of surgical intervention with lesional epilepsy, the most common predictor of a successful or favorable outcome is the ability to remove all affected areas depicted on imaging (or MRI). Failure to resect the entire area of abnormal tissue shown is the most common reason for the surgery to fail or not produce a favorable outcome.
Austin had an incomplete frontal lobectomy -meaning the entire lesion as seen on the MRI was not removed. They could not safely remove the entire area without causing harm (right-sided paralysis). At the back of the frontal lobe lies the motor strip (this is where the motor function controlling his right side resides). Removing that removes his ability to move his right side. Even though that area was clearly spiking (favorable for seizure production) during electrode placement in surgery, they felt it better to leave it alone. Austin is quite delayed in every area. However, his mobility is one of his stronger areas. Even with a clearly defined lesion (abnormal area) on his MRI, a deficit such as paralysis would be devastating to a child with so many other "problems". They wanted to leave him with this function and see if removing the other area would be sufficient. They also did not want to take the chance that there could be more extensive abnormalities causing seizures that MRI was not showing, and removing that would mean causing paralysis and still not stopping seizures. I did not even consider this scenario, and it was not explained to me until I asked him point blank, Why? What is more devastating...a motor deficit involving one side, or daily seizures affecting his development? He definitely answered my question. More devastating would be paralysis on one side AND seizures.
They also felt that the areas that were removed were so significant that they anticipated a huge improvement. They felt it was enough to make a huge impact, and in the case that it didn't, we could always go back and take another look. The areas removed could have been enough to suppress any other abnormal areas from producing seizures -or it could have the opposite effect...the removal could make any other areas take over and produce seizures. This is what he feels happened.
We talked about other scenarios as well. Austin has confirmed Focal Cortical Dysplasia Type II (or FCD Type II). This type tends to be more extensive and widespread. It is the leading cause for intractable epilepsy. It could be that the only remaining area is the motor strip and removing that (causing paralysis on his right side) would stop the seizures. Or, it could be multilobar (involving other lobes of his left side) in which a total hemispherectomy (complete removal of the left side of his brain) would work. However, there is also the possibility that it is in multiple areas ALL over his brain -right hemisphere as well. That is the worse case scenario because that would mean surgery would never be an option.
Not that we are talking surgery again. I did want to know ALL our future options though. It's not completely out of the question later on, but there would have to be more convincing evidence ruling out anything that suggests his dysplasia is bilateral (both side of the brain). Right now, though, all we have is the MRI which showed the lesion to be contained to the frontal lobe. It may or may not be in other areas and is just not showing up (like his previous "normal" MRIs). We just can't take the chance that it is far more extensive in which case another surgery could be unsuccessful. My heart could not take that again.
In my heart, I do not feel it is bilateral. Although my eyes are clearly not enough to validate this, I truly believe it is only the left side. I could be wrong. What do I know? But, if seizure appearance really does play an important role in determining which side is affected, it is clearly only his left. I don't think I have ever seen a left sided seizure. Sure, he has generalized seizures, but almost all the seizures I see definitely have more of a right sided appearance. I've pointed it out numerous times. And when I had no clue there was left frontal lobe dysplasia, I knew something was going on with the left side. Even when there was absolutely no other evidence to suggest this. They are more right sided now than ever. And he has a strange new behavior that involves picking at his right thumb (always associated with either seizures or seizure behavior, aka the zoning) in addition to still rubbing his right hand before/during/after seizures and/or clusters. I feel just as confident as I did before, but I'm leaving it at that for now. It has only been one month since surgery and we are in no place to be considering it again. Our wounds are still too fresh to even really go there. Not to mention Austin is still healing and will need much more time before another surgery is even an option anyway.
We discussed our present options. We don't have any new meds to try. We didn't get a good start on the LGIT (low glycemic index treatment), thanks to the steroids wreaking havoc on everything. Which reminds me...the steroids, although showing some success (drops are down and there are extended periods with no seizures at all), cannot be a long term treatment. There are too many health risks and side effects associated with them. When treating seizures, they are only meant to be short term. Either they will stop the seizures or they won't. Improvement is not enough. The only thing worse than a med not helping is a med that helps that has to be withdrawn. That is where we are.
Since we have no more meds to trial, we start over. He asked me which ones I would like to give another try -ones that I thought might have helped. He said there is a possibility they will help now -due to the time that has passed and the areas left from surgery may be more responsive. The only ones that came to mind were zonisamide (Zonegran) and Depakene. We have a long history with the Zonegran and I really didn't want to go back there (we finally got him off after two years of trying last fall). He was on Depakene for about six months back in 2009. During that time he had no drops at all. I always blamed the vigabatrin for the drops since they started when he was first given it and stopped when he got off. During the vigabatrin wean, we added the Depakene. It wasn't until a month after stopping Depakene that the drops came back. Our lives were so much different before the drops came back. I really leaned more toward starting Depakene again first, but he settled on Zonegran. We started him back on a decent dosage. No wasting time on this trial because I was adamant that I didn't want to draw it out again. If there is not significant improvement within a couple weeks, we will go to Depakene. Hopefully, we will start the clonazepam wean sometime soon when we're not making other changes. I'm dreading that one, but there's absolutely no reason to have him on it. The only reason he is still on it is because it will be a very long and difficult wean and there have always been other changes taking place. I'm going to ask if we can maybe to a little at a time in between other changes. The key is to not make simultaneous changes. Which is why we decided against the LGIT for the moment. He said we should keep it in our back pocket for now and rethink it if these other two meds fail. There's also the ketogenic diet we can consider again since it did have an effect. No comment on that one for now.
We will go in April for another follow up and an MRI to check that his brain is healing properly. Then, we will have an EEG.
So, that's it. That's the plan for now.
Monday, February 14, 2011
Thursday, February 10, 2011
Ping Pong Anyone?
Never in the almost three years of dealing with daily seizures have I ever been so indecisive about our situation. Sure, it's been up and down since this all started, but it's never changed so rapidly over such a short period of time -multiple times at that.
Before his surgery, his changes were almost always gradual. He's never had consistently high or low amounts of seizures, but the inconsistencies have never been to this extreme. There is only one time that I can recall where seizures were so scarce that I could actually imagine them stopping altogether. One time in nearly three years. And he wasn't seizure free for even a day. Instead of having five or six clusters of 15-90 seizures, he would have random, single seizures scattered throughout the day totaling maybe 15-25. I think that lasted a couple weeks. It was immediately following the ACTH wean while he was on the lowest AED dose he's ever been on (50mg of zonisamide). Then, just like someone flipped a switch it was over. Clusters started back up and he was having (on average) 50 a day. I never realized at the time that I would eventually wish he was only having 50 seizures a day. That was a long time ago. Ages it seems now.
From that point on until now, we've seen them gradually evolve. Over the past two and half years, we've seen new ones appear and disappear and reappear. We've seen intensity and frequency increase and decrease. We've seen development progress and regress and progress again. We've seen his personality peek and decline. It's been a never ending cycle of changes. And the only thing that was ever consistent is that nothing was ever consistent. It's what we began to realize as our normal. We adapted.
As humans, one of our most basic survival mechanisms is our ability to adapt. Adapt I have -without even realizing it most of the time. Little by little. I slowly changed and adjusted my expectations from praying it would stop so we could resume our lives to praying it would stop so we could save our son's life. Three years worth of daily seizures, I know now that there's no turning back. I also know that our life is no longer on pause until we can stop the seizures. This is our life. The damage has been done and it's unlikely we will ever be able to repair the damage that has been caused by the thousands and thousands of seizures he's had in his life. It's been a very very slow realization, but it happened.
I adapted.
The difference, though, between what has transpired over the last few years and now, is the fact that nothing happened overnight. Other than that infamous day of diagnosis, we've had the luxury of gradually adjusting to and accepting the changes that have taken place. Not now. We've seen more change in three weeks than we saw in three years. And it changes EVERY SINGLE DAY. Just when I think it's better, it gets worse. And when I think it won't get better, it does.
I can't even describe his progress. I've never been so completely confused. Picture different types of seizures, intensity, frequency, clusters, no clusters, alertness, little alertness, interaction, little interaction, laughter, and screaming. Then jumble all those up into every combination imaginable. And change it everyday. That's what we're seeing.
I've said it many times before, I expected to see seizures after surgery. I expected mood swings and irritability. Our doctors even prepared me that I may see different types of seizures immediately following surgery. But these extreme changes occurring every single day, four weeks after surgery, I did not expect.
Yep, today is exactly four weeks since surgery. Four weeks ago today, I was sitting in the waiting room at TCH anxiously waiting for those phone calls from the OR. For six excruciating hours, I waited. I can still vividly remember almost everything about that day. Surrounded by friends and family, we were praying for our miracle. With every minute that ticked by, we got closer. I can still almost feel that hope coursing through my body like it did that day. Finally, I thought all day. Finally, Austin was getting his chance to overcome this. A real fighting chance.
And here we are. Still no closer to knowing anything than we were four weeks ago. Still praying for improvement. We do see it. Then, we don't. Then we do. I have to admit, there is still overall improvement, but it's not enough. Had I known where we'd be four weeks out before the surgery, it certainly wouldn't have been enough then either.
How in the world do I adapt to something that changes every single day? It's difficult not to get my hopes up when I see him go hours and hours without a seizure, something we never ever saw before surgery. On the flip side, it's difficult to keep my hopes up when the days seem no different than before surgery. We've never been at such a crossroads before, and it's never shifted so much from day to day.
I've never been so eager to go see our less than personable epi. We go tomorrow for our one month follow up. Maybe we'll get some insight into what's going on and where to go from here.
We don't have an EEG scheduled (why I don't know), but I'm in the process of collecting some of Austin's seizures and behaviors on video to take with me tomorrow. He's going to see what's going on one way or another!
By the way, I do appreciate all the advice, support and encouragement I've received over the past month. Whether cards, balloons, sending food, prayer chains, comments here, texts, phone calls and emails...I feel very blessed for our support system. I haven't been great at keeping up with many of you, but I am still very grateful and nothing has gone unnoticed.
Before his surgery, his changes were almost always gradual. He's never had consistently high or low amounts of seizures, but the inconsistencies have never been to this extreme. There is only one time that I can recall where seizures were so scarce that I could actually imagine them stopping altogether. One time in nearly three years. And he wasn't seizure free for even a day. Instead of having five or six clusters of 15-90 seizures, he would have random, single seizures scattered throughout the day totaling maybe 15-25. I think that lasted a couple weeks. It was immediately following the ACTH wean while he was on the lowest AED dose he's ever been on (50mg of zonisamide). Then, just like someone flipped a switch it was over. Clusters started back up and he was having (on average) 50 a day. I never realized at the time that I would eventually wish he was only having 50 seizures a day. That was a long time ago. Ages it seems now.
From that point on until now, we've seen them gradually evolve. Over the past two and half years, we've seen new ones appear and disappear and reappear. We've seen intensity and frequency increase and decrease. We've seen development progress and regress and progress again. We've seen his personality peek and decline. It's been a never ending cycle of changes. And the only thing that was ever consistent is that nothing was ever consistent. It's what we began to realize as our normal. We adapted.
As humans, one of our most basic survival mechanisms is our ability to adapt. Adapt I have -without even realizing it most of the time. Little by little. I slowly changed and adjusted my expectations from praying it would stop so we could resume our lives to praying it would stop so we could save our son's life. Three years worth of daily seizures, I know now that there's no turning back. I also know that our life is no longer on pause until we can stop the seizures. This is our life. The damage has been done and it's unlikely we will ever be able to repair the damage that has been caused by the thousands and thousands of seizures he's had in his life. It's been a very very slow realization, but it happened.
I adapted.
The difference, though, between what has transpired over the last few years and now, is the fact that nothing happened overnight. Other than that infamous day of diagnosis, we've had the luxury of gradually adjusting to and accepting the changes that have taken place. Not now. We've seen more change in three weeks than we saw in three years. And it changes EVERY SINGLE DAY. Just when I think it's better, it gets worse. And when I think it won't get better, it does.
I can't even describe his progress. I've never been so completely confused. Picture different types of seizures, intensity, frequency, clusters, no clusters, alertness, little alertness, interaction, little interaction, laughter, and screaming. Then jumble all those up into every combination imaginable. And change it everyday. That's what we're seeing.
I've said it many times before, I expected to see seizures after surgery. I expected mood swings and irritability. Our doctors even prepared me that I may see different types of seizures immediately following surgery. But these extreme changes occurring every single day, four weeks after surgery, I did not expect.
Yep, today is exactly four weeks since surgery. Four weeks ago today, I was sitting in the waiting room at TCH anxiously waiting for those phone calls from the OR. For six excruciating hours, I waited. I can still vividly remember almost everything about that day. Surrounded by friends and family, we were praying for our miracle. With every minute that ticked by, we got closer. I can still almost feel that hope coursing through my body like it did that day. Finally, I thought all day. Finally, Austin was getting his chance to overcome this. A real fighting chance.
And here we are. Still no closer to knowing anything than we were four weeks ago. Still praying for improvement. We do see it. Then, we don't. Then we do. I have to admit, there is still overall improvement, but it's not enough. Had I known where we'd be four weeks out before the surgery, it certainly wouldn't have been enough then either.
How in the world do I adapt to something that changes every single day? It's difficult not to get my hopes up when I see him go hours and hours without a seizure, something we never ever saw before surgery. On the flip side, it's difficult to keep my hopes up when the days seem no different than before surgery. We've never been at such a crossroads before, and it's never shifted so much from day to day.
I've never been so eager to go see our less than personable epi. We go tomorrow for our one month follow up. Maybe we'll get some insight into what's going on and where to go from here.
We don't have an EEG scheduled (why I don't know), but I'm in the process of collecting some of Austin's seizures and behaviors on video to take with me tomorrow. He's going to see what's going on one way or another!
By the way, I do appreciate all the advice, support and encouragement I've received over the past month. Whether cards, balloons, sending food, prayer chains, comments here, texts, phone calls and emails...I feel very blessed for our support system. I haven't been great at keeping up with many of you, but I am still very grateful and nothing has gone unnoticed.
Monday, February 7, 2011
Mommy vs Doctor
That's how it feels sometimes. Like when we went behind his back to see Dr. Chugani in Detroit. We never discussed it with him. Not even once.
We've been seeing him for over two years now, and I have to admit, it's been a love-hate relationship. Lately, it's been less lovin' him, since we got home anyway. A panicked mother who has just let her son have brain surgery to control seizures that are nowhere near controlled may just need some comforting and reassurance...especially from the doctor that recommended it. Not from a nurse relaying messages that has no earthly idea what's going on. And that's why there's been less lovin' and more...well, hate is a strong word. Strong dislike is more like it. ;)
So, to the point. I quickly realized, after several failed attempts to get this guy on the phone, that we were going nowhere. And I was desperate. Desperate to get back that little boy with the sparkle in his eyes. The one we saw for a week and three days after surgery.
We racked our brains trying to pinpoint what happened. My mom kept mentioning the steroid we had to stop. I immediately blew it off because it was prescribed for swelling after the surgery. Finally, when I was at my lowest point, I decided to google it. To my surprise, there were actually a lot of indications that it could have been making a difference.
I finally managed to get our doctor's nurse practitioner on the phone and explained to her everything that has taken place. I couldn't stress more that I felt like something had happened. The only major change in anything (besides the Benadryl -which had long been taken out of consideration) was the discontinuation of the steroid. She agreed another trial of it was worth a shot. If nothing else, I would be at peace knowing we tried it.
Our doctor couldn't have disagreed more. The first words out of the NP's mouth when she called me back were that he was not happy with the proposed trial and that he felt it would have no effect at all. But, he agreed we could do a very short trial and gave dosage and weaning instructions for the next 20 days. Also, he felt so strongly that it was a waste of time that he wanted us to start the LGIT diet simultaneously.
Ugh, the thought of another diet makes me nuts. More on that later...
We started this dexamethasone trial with our doctor's instructions and permission but without his blessing. He must think I'm crazy. How could I not want to try it though? If that were the only change between a dream and a nightmare, wouldn't anyone want to try it? If for nothing else, to rule it out?
It's Monday. Day 5 of 20 of the trial. The last day for three daily doses. Tomorrow we go down to twice daily. The results we've seen have been confusing to say the least. Thursday (Day 1), he went over four hours with no seizures that afternoon. Then a rough night followed by a rough morning. Then, almost nothing for 20 hours. A medium intensity head drop and a few light jerks. We haven't seen such long breaks like that since that first week after surgery. Overall, frequency and intensity seem to be much better.
Almost ALL of the ones he does have are SO blatantly right sided it makes me cringe. Eyes to the right, head to the right, right arm flying up or out, right leg jerks. From everything I've read, obvious right or left sided seizures typically indicate issues on the opposite side of the brain. Austin had his LEFT frontal lobe resected. He was having right sided seizures before surgery. He is STILL having right sided seizures. It makes me so angry that they left that tissue there to keep producing seizures.
In any event, we are trying and trying to duplicate that what appeared to be success -or immense improvement. The steroid trial seems to be making a difference. Whether it's overall effects will be enough, I can't say. It doesn't seem to be consistently getting better with every day, it's more like complete unpredictability. He does amazing for maybe 12 hours, then we start all over. But, at least there are those amazing moments sprinkled in there rather than it getting progressively worse like it was before we started it. I have no clue what to expect from here on out.
And, of course, like with any steroid treatment, there are major side effects. The most obvious being IRRITABILITY!! The 'roid rage has begun. For the first time since his surgery, I'm flying solo here with him. It has taken me HOURS to write this post. Constant interruptions...this kid can go from laughing to SCREAMING in seconds. Everything seems to set him off -music, singing, loud noises, and sometimes nothing at all. The photos below are a typical meal lately.
'Roid rage the next...
I think I started singing him a song in this particular fit he had. Tears, lip puckering, snotty meltdowns...and nothing seems to help. I remember reading that Vitamin B6 is a mood stabilizer. I think he took it when he was on Keppra (another AED that causes extreme irritability). Wonder if it helps on steroids...
We've been seeing him for over two years now, and I have to admit, it's been a love-hate relationship. Lately, it's been less lovin' him, since we got home anyway. A panicked mother who has just let her son have brain surgery to control seizures that are nowhere near controlled may just need some comforting and reassurance...especially from the doctor that recommended it. Not from a nurse relaying messages that has no earthly idea what's going on. And that's why there's been less lovin' and more...well, hate is a strong word. Strong dislike is more like it. ;)
So, to the point. I quickly realized, after several failed attempts to get this guy on the phone, that we were going nowhere. And I was desperate. Desperate to get back that little boy with the sparkle in his eyes. The one we saw for a week and three days after surgery.
We racked our brains trying to pinpoint what happened. My mom kept mentioning the steroid we had to stop. I immediately blew it off because it was prescribed for swelling after the surgery. Finally, when I was at my lowest point, I decided to google it. To my surprise, there were actually a lot of indications that it could have been making a difference.
I finally managed to get our doctor's nurse practitioner on the phone and explained to her everything that has taken place. I couldn't stress more that I felt like something had happened. The only major change in anything (besides the Benadryl -which had long been taken out of consideration) was the discontinuation of the steroid. She agreed another trial of it was worth a shot. If nothing else, I would be at peace knowing we tried it.
Our doctor couldn't have disagreed more. The first words out of the NP's mouth when she called me back were that he was not happy with the proposed trial and that he felt it would have no effect at all. But, he agreed we could do a very short trial and gave dosage and weaning instructions for the next 20 days. Also, he felt so strongly that it was a waste of time that he wanted us to start the LGIT diet simultaneously.
Ugh, the thought of another diet makes me nuts. More on that later...
We started this dexamethasone trial with our doctor's instructions and permission but without his blessing. He must think I'm crazy. How could I not want to try it though? If that were the only change between a dream and a nightmare, wouldn't anyone want to try it? If for nothing else, to rule it out?
It's Monday. Day 5 of 20 of the trial. The last day for three daily doses. Tomorrow we go down to twice daily. The results we've seen have been confusing to say the least. Thursday (Day 1), he went over four hours with no seizures that afternoon. Then a rough night followed by a rough morning. Then, almost nothing for 20 hours. A medium intensity head drop and a few light jerks. We haven't seen such long breaks like that since that first week after surgery. Overall, frequency and intensity seem to be much better.
Almost ALL of the ones he does have are SO blatantly right sided it makes me cringe. Eyes to the right, head to the right, right arm flying up or out, right leg jerks. From everything I've read, obvious right or left sided seizures typically indicate issues on the opposite side of the brain. Austin had his LEFT frontal lobe resected. He was having right sided seizures before surgery. He is STILL having right sided seizures. It makes me so angry that they left that tissue there to keep producing seizures.
In any event, we are trying and trying to duplicate that what appeared to be success -or immense improvement. The steroid trial seems to be making a difference. Whether it's overall effects will be enough, I can't say. It doesn't seem to be consistently getting better with every day, it's more like complete unpredictability. He does amazing for maybe 12 hours, then we start all over. But, at least there are those amazing moments sprinkled in there rather than it getting progressively worse like it was before we started it. I have no clue what to expect from here on out.
And, of course, like with any steroid treatment, there are major side effects. The most obvious being IRRITABILITY!! The 'roid rage has begun. For the first time since his surgery, I'm flying solo here with him. It has taken me HOURS to write this post. Constant interruptions...this kid can go from laughing to SCREAMING in seconds. Everything seems to set him off -music, singing, loud noises, and sometimes nothing at all. The photos below are a typical meal lately.
Happy as can be one minute...
'Roid rage the next...
I think I started singing him a song in this particular fit he had. Tears, lip puckering, snotty meltdowns...and nothing seems to help. I remember reading that Vitamin B6 is a mood stabilizer. I think he took it when he was on Keppra (another AED that causes extreme irritability). Wonder if it helps on steroids...
Saturday, January 29, 2011
And it continues...
We've had a few scares since my last post -which is why I never got to the good stuff I promised. I will get to it soon. There are so many. But, first...
Seizures are no better. Actually they are worse. So instead of just being devastated that he is not having better improvement like last week, I've been beside myself with worry on top of that. He started having not only more of his typical pre-surgery seizures, but new and different ones as well. One that prompted the 8:30pm call to the on-call neuro at the hospital. He had what appeared to be a typical drop seizure only this time he remained dazed and wouldn't breathe for what seemed like an eternity. In reality though, it was only about thirty seconds. We've never had anything quite like this so I've never even been given a prescription for a rescue med like Diastat. Not that we would have needed it in this case, but I was not comfortable knowing how far out we live and not having anything like that on hand...just in case. I didn't trust our past experiences. I don't trust anything anymore. Nothing is going the way we had hoped -or even told by dozens of doctors and surgeons we've seen and spoken to over the past two weeks. Needless to say, I stayed up til the early morning hours just watching him sleep.
Then the next morning (yesterday), another new one. Uncontrollable lip quivering and up and down jaw movement. What was so strange about this one is that it appeared very mild, yet he was so out of it once it was over...like he'd just had an exhausting tonic seizure.
Of course I called our epi. And, of course he didn't return the call himself (even after I specifically asked that I speak to him or his nurse practitioner -whom I'm very comfortable with- directly). The word back was...The increase in seizures could be due to a delayed response to the Benedryl (I can be a gullible person, but I don't buy that). Do not give any more Benedryl (he had 3 doses total and it had been 6 days since the last one). Watch him over the weekend and call on Monday to report his condition. If there's no improvement, the LGIT (low glycemic index treatment -it's like a liberal form of the ketogenic diet) will likely be initiated. Instructions can be given over the phone and no hospital admission is required for this one.
He seemed to do slightly better yesterday than the day before. Until this morning. Cluster after cluster, drop after drop. Two hours of being awake and he'd seized nearly sixty times. I called Chad to tell him an ER trip was in our near future. I feared post op complications. How the heck could he be worsening so much?? I imagined swelling, bleeding, you name it. The on-call neurosurgeon rejected all of those suspicions. He said it was too far out since the surgery to be seeing any of that based on an increase in seizures alone. He didn't have any other symptoms that would make him suspect any complications related directly to the surgery. He didn't recommend that we come in. He didn't discourage it though and said they would certainly check him out if we did come, but he didn't think we needed to. He was actually the one that released us and he remembered us. He was surprised that Austin's improvement had declined (he's not the only one) because he remembered how well he was doing.
Really. How can 80-90% initial seizure reduction go down so drastically so quickly? Really. I'm completely lost.
Like I mentioned before, I keep replaying past conversations I've had with ALL the doctors and surgeons we've talked to. Nothing. Nothing prepared us for this. Even the speculations that this was unlikely to stop all the seizures. It certainly didn't prepare me any when the surgeon came out and the first thing out of his mouth regarding the surgery was they were confident they got the majority of the seizures. And it definitely wasn't when our epi (Mr. Doom & Gloom himself) came in to check on us and said he was really really pleased with how it went. They all just knew we were in for great improvement.
Update: It's been several hours since I started this entry (duty called, Austin woke up from his nap), and I'm relieved to say there's been some improvement since this morning. I'm still holding my breath, praying, crossing my fingers and my toes, and hoping this continues. That's one of the hardest parts. No day is the same. Every single day brings us something different. Even morning vs evening. He could have a terrible morning and a wonderful afternoon (and vice versa).
Seizures are no better. Actually they are worse. So instead of just being devastated that he is not having better improvement like last week, I've been beside myself with worry on top of that. He started having not only more of his typical pre-surgery seizures, but new and different ones as well. One that prompted the 8:30pm call to the on-call neuro at the hospital. He had what appeared to be a typical drop seizure only this time he remained dazed and wouldn't breathe for what seemed like an eternity. In reality though, it was only about thirty seconds. We've never had anything quite like this so I've never even been given a prescription for a rescue med like Diastat. Not that we would have needed it in this case, but I was not comfortable knowing how far out we live and not having anything like that on hand...just in case. I didn't trust our past experiences. I don't trust anything anymore. Nothing is going the way we had hoped -or even told by dozens of doctors and surgeons we've seen and spoken to over the past two weeks. Needless to say, I stayed up til the early morning hours just watching him sleep.
Then the next morning (yesterday), another new one. Uncontrollable lip quivering and up and down jaw movement. What was so strange about this one is that it appeared very mild, yet he was so out of it once it was over...like he'd just had an exhausting tonic seizure.
Of course I called our epi. And, of course he didn't return the call himself (even after I specifically asked that I speak to him or his nurse practitioner -whom I'm very comfortable with- directly). The word back was...The increase in seizures could be due to a delayed response to the Benedryl (I can be a gullible person, but I don't buy that). Do not give any more Benedryl (he had 3 doses total and it had been 6 days since the last one). Watch him over the weekend and call on Monday to report his condition. If there's no improvement, the LGIT (low glycemic index treatment -it's like a liberal form of the ketogenic diet) will likely be initiated. Instructions can be given over the phone and no hospital admission is required for this one.
He seemed to do slightly better yesterday than the day before. Until this morning. Cluster after cluster, drop after drop. Two hours of being awake and he'd seized nearly sixty times. I called Chad to tell him an ER trip was in our near future. I feared post op complications. How the heck could he be worsening so much?? I imagined swelling, bleeding, you name it. The on-call neurosurgeon rejected all of those suspicions. He said it was too far out since the surgery to be seeing any of that based on an increase in seizures alone. He didn't have any other symptoms that would make him suspect any complications related directly to the surgery. He didn't recommend that we come in. He didn't discourage it though and said they would certainly check him out if we did come, but he didn't think we needed to. He was actually the one that released us and he remembered us. He was surprised that Austin's improvement had declined (he's not the only one) because he remembered how well he was doing.
Really. How can 80-90% initial seizure reduction go down so drastically so quickly? Really. I'm completely lost.
Like I mentioned before, I keep replaying past conversations I've had with ALL the doctors and surgeons we've talked to. Nothing. Nothing prepared us for this. Even the speculations that this was unlikely to stop all the seizures. It certainly didn't prepare me any when the surgeon came out and the first thing out of his mouth regarding the surgery was they were confident they got the majority of the seizures. And it definitely wasn't when our epi (Mr. Doom & Gloom himself) came in to check on us and said he was really really pleased with how it went. They all just knew we were in for great improvement.
Update: It's been several hours since I started this entry (duty called, Austin woke up from his nap), and I'm relieved to say there's been some improvement since this morning. I'm still holding my breath, praying, crossing my fingers and my toes, and hoping this continues. That's one of the hardest parts. No day is the same. Every single day brings us something different. Even morning vs evening. He could have a terrible morning and a wonderful afternoon (and vice versa).
Thursday, January 27, 2011
First the not so good
I guess I'll just dive right into it. No sense in stalling or beating around the bush.
This has been an awful week for Austin and seizures. Awful because he just had brain surgery to relieve him of some of this. Yes, we still see improvement in every area. But, dang it, this is NOT good enough considering what he's been through to help him. There. I said it.
I've been holding on to that for days. Scared to say anything to anyone besides my mom. Because she is here with me every minute of everyday, so she knows and I can't hide it from her.
I knew not to expect a miracle. I prayed for one, of course. I tried to expect it (because you need to expect your prayers to be answered -that's faith, or so I'm told), but there was always that little piece of me that said I needed to be realistic. So I didn't expect 100% seizure freedom. I was crushed to see post-op seizures. Crushed. Regardless of what the doctors said (...it's not uncommon, don't freak, blah, blah, blah, etc.), I did hope we wouldn't see anymore though. He'd have a rough cluster and my heart would sink. But, then, maybe nothing for hours. HOURS. We never EVER got 3+ hours with no seizures. Much less 8-9. Never. So, after several days of this, I thought I could handle it. Especially since they were still considered post-op seizures. The ones they said they generally write off anyway. And when he did have a cluster, it was usually no more than 7 or 8.
Then came Saturday. The morning after we discovered a strange rash (of course he gets weird stuff on Friday nights...always). By the way, our neurosurgeon was paged and he told us to discontinue Austin's Decadron & Zantac (steroids he was taking for swelling and the Zantac to protect his tummy from the steroids). We were in the weaning process for the steroid, but because it was the only drug Austin had never been on before, he wanted to stop it in case it was an allergic reaction. I was also instructed to give him Benedryl every 6-8 hours. I vaguely remembered a nurse telling me a couple years ago that antihistamines tend to lower seizure thresholds -which is what Benedryl is. Now, back to Saturday. Austin had a mean cluster of nearly 30 seizures. I blamed the Benedryl, of course. Then nothing for about 9 hours. We had a wonderful day...nearly all day. A vibrant, smiling, calm, laughing, interactive, responsive, non-seizing Austin for NINE WHOLE HOURS. Unheard of before surgery. The rash wasn't going away, but he didn't seem to be bothered (other than a little scratching here and there) by it.
Then Sunday. The rash was looking much better so I decided no more Benedryl. Seizures weren't great, but he still had hours between some of them. Happy, alert, calm, interactive once again. Until Sunday night. He started having these strange bursts of laughter for no apparent reason. I've heard of laughing seizures, but I've never seen one. I'm not saying that what he was having, but it was very weird. My gut told me something wasn't quite right. I'd been paranoid since Day 1 about everything, but I knew this was not good. He also developed a new behavior since surgery. He picks at his right thumb. This increased quite a bit. He seemed to zone out a lot more -like pre-surgery Austin.
Oh, and before I forget, he started having seizures in his sleep last Thursday or Friday night as well. I'd never seen him have them like that before. He may only have eight seizures all day. But as soon as he started drifting off to sleep, he'd have a couple. Then he'd wake up. Drift off again. Have a couple more. Then he'd just sleep right through them. He'd have more in an hour of sleeping than he'd had all day. Before surgery, he'd typically wake up, THEN start having seizures. I can't recall ever seeing any while he slept. This worried me. A lot.
So, by Monday, I started to unravel. He had stayed up 14-16 hours at a time over the weekend. WOULD NOT take a nap. Then he only slept 8-9 hours at night. So, after a nasty morning cluster of about 10 seizures, he finally seemed to want to take a nap. Seizures kept waking him up. Sleep. Seizure. Wake up crying. Sleep. Seizure. Wake up. About four or five times.
Drops started coming more frequent. He was no longer getting hours in between anymore. An hour -two at the most. I was flashing back to our life before surgery. Sure, seizures are still down overall. But, if they're attacking him every hour or so, his life may not be much different in the long run. He seemed to zone out more.
Tuesday. Even more seizures. And I swear, that new sparkle in his eyes seemed to start fading.
Wednesday. More than Tuesday.
Today. At the rate he's going, it will be more than yesterday.
That's the best summary of his seizures I can muster while I'm gently typing so as not to wake him while he naps just 10 ft away from me.
We have instructions to increase the dosage of his current seizure med and will have a follow up with the epilepsy specialist in a couple weeks. He still keeps saying seizures the first month are common. I keep replaying our neurosurgeon saying, I really think we got the majority. And our usually very depressing epi flashing a big smile and telling me how optimistic he is. Hugging me. Encouraging me. Very uncharacteristic of him. I keep revisiting that in my mind for strength. Because what Austin's doing right now is taking all the strength I have -and then some. They said this was expected. But here we are, two weeks to the day. I expected gradual improvement over this month. Not the opposite. So, it's scaring the shit out of me. That it may actually get worse than this.
I can't give you such a heavy load of depressing junk and not recognize the positives though. There are many. Whether (at this point) it's worth him having part of his brain removed...I don't know. Maybe time will tell. It's too early to start making assumptions (about that AND seizures). I promise to share these positives. Hopefully tomorrow.
This has been an awful week for Austin and seizures. Awful because he just had brain surgery to relieve him of some of this. Yes, we still see improvement in every area. But, dang it, this is NOT good enough considering what he's been through to help him. There. I said it.
I've been holding on to that for days. Scared to say anything to anyone besides my mom. Because she is here with me every minute of everyday, so she knows and I can't hide it from her.
I knew not to expect a miracle. I prayed for one, of course. I tried to expect it (because you need to expect your prayers to be answered -that's faith, or so I'm told), but there was always that little piece of me that said I needed to be realistic. So I didn't expect 100% seizure freedom. I was crushed to see post-op seizures. Crushed. Regardless of what the doctors said (...it's not uncommon, don't freak, blah, blah, blah, etc.), I did hope we wouldn't see anymore though. He'd have a rough cluster and my heart would sink. But, then, maybe nothing for hours. HOURS. We never EVER got 3+ hours with no seizures. Much less 8-9. Never. So, after several days of this, I thought I could handle it. Especially since they were still considered post-op seizures. The ones they said they generally write off anyway. And when he did have a cluster, it was usually no more than 7 or 8.
Then came Saturday. The morning after we discovered a strange rash (of course he gets weird stuff on Friday nights...always). By the way, our neurosurgeon was paged and he told us to discontinue Austin's Decadron & Zantac (steroids he was taking for swelling and the Zantac to protect his tummy from the steroids). We were in the weaning process for the steroid, but because it was the only drug Austin had never been on before, he wanted to stop it in case it was an allergic reaction. I was also instructed to give him Benedryl every 6-8 hours. I vaguely remembered a nurse telling me a couple years ago that antihistamines tend to lower seizure thresholds -which is what Benedryl is. Now, back to Saturday. Austin had a mean cluster of nearly 30 seizures. I blamed the Benedryl, of course. Then nothing for about 9 hours. We had a wonderful day...nearly all day. A vibrant, smiling, calm, laughing, interactive, responsive, non-seizing Austin for NINE WHOLE HOURS. Unheard of before surgery. The rash wasn't going away, but he didn't seem to be bothered (other than a little scratching here and there) by it.
Then Sunday. The rash was looking much better so I decided no more Benedryl. Seizures weren't great, but he still had hours between some of them. Happy, alert, calm, interactive once again. Until Sunday night. He started having these strange bursts of laughter for no apparent reason. I've heard of laughing seizures, but I've never seen one. I'm not saying that what he was having, but it was very weird. My gut told me something wasn't quite right. I'd been paranoid since Day 1 about everything, but I knew this was not good. He also developed a new behavior since surgery. He picks at his right thumb. This increased quite a bit. He seemed to zone out a lot more -like pre-surgery Austin.
Oh, and before I forget, he started having seizures in his sleep last Thursday or Friday night as well. I'd never seen him have them like that before. He may only have eight seizures all day. But as soon as he started drifting off to sleep, he'd have a couple. Then he'd wake up. Drift off again. Have a couple more. Then he'd just sleep right through them. He'd have more in an hour of sleeping than he'd had all day. Before surgery, he'd typically wake up, THEN start having seizures. I can't recall ever seeing any while he slept. This worried me. A lot.
So, by Monday, I started to unravel. He had stayed up 14-16 hours at a time over the weekend. WOULD NOT take a nap. Then he only slept 8-9 hours at night. So, after a nasty morning cluster of about 10 seizures, he finally seemed to want to take a nap. Seizures kept waking him up. Sleep. Seizure. Wake up crying. Sleep. Seizure. Wake up. About four or five times.
Drops started coming more frequent. He was no longer getting hours in between anymore. An hour -two at the most. I was flashing back to our life before surgery. Sure, seizures are still down overall. But, if they're attacking him every hour or so, his life may not be much different in the long run. He seemed to zone out more.
Tuesday. Even more seizures. And I swear, that new sparkle in his eyes seemed to start fading.
Wednesday. More than Tuesday.
Today. At the rate he's going, it will be more than yesterday.
That's the best summary of his seizures I can muster while I'm gently typing so as not to wake him while he naps just 10 ft away from me.
We have instructions to increase the dosage of his current seizure med and will have a follow up with the epilepsy specialist in a couple weeks. He still keeps saying seizures the first month are common. I keep replaying our neurosurgeon saying, I really think we got the majority. And our usually very depressing epi flashing a big smile and telling me how optimistic he is. Hugging me. Encouraging me. Very uncharacteristic of him. I keep revisiting that in my mind for strength. Because what Austin's doing right now is taking all the strength I have -and then some. They said this was expected. But here we are, two weeks to the day. I expected gradual improvement over this month. Not the opposite. So, it's scaring the shit out of me. That it may actually get worse than this.
I can't give you such a heavy load of depressing junk and not recognize the positives though. There are many. Whether (at this point) it's worth him having part of his brain removed...I don't know. Maybe time will tell. It's too early to start making assumptions (about that AND seizures). I promise to share these positives. Hopefully tomorrow.
Saturday, January 22, 2011
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.
Home sweet home
First time up and about. Immediate smiles :)
The new 'do. Just like Daddy!
Wanna see my food?! ;)
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?! ;)
Wednesday, January 19, 2011
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).
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).
Sunday, January 16, 2011
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.
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.
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.
Saturday, January 15, 2011
Goodbye ICU, Hello 10th floor!
Just before they took him back for surgery
In ICU about 6 hrs post surgeryIt'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.
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 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.
Thursday, January 13, 2011
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!
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