Monday, August 31, 2009

And Just Like That...

The day started great, and continues to be awesome. Neuro-Surgery came in and cleared Bennett for discharge. Then Epilepsy came in, discussed the med situation and cleared Bennett for discharge.

We're going home today. TODAY.

Hard as it is for me to even imagine, Thursday my son had major brain surgery. Today, Monday, four days later, we are going home. Felt like a month. But what a SHORT period of time when you really think about it.

Neuro-Surgery said his incision looked great, they'd already told us the follow-up MRI looked clean and how it was supposed to. Gave us some stuff to keep in mind about the healing and so on, and of course that they will let us know when they do about the pathology.

Epilepsy said they reviewed all the EEG data from the past two nights. There was some spiking, some re-settling, some oddness in it, but they said it wasn't anything that we really needed to worry about. They said he had ONE spasm overnight last night that was indicated by the tech. The suggestion was that it was probably again just a result of the healing...takes a while for the brain to learn that it doesn't have to do that anymore.

The Epileptologist said that the true 'hypsarrhythmia' was gone from the EEG. She also said to keep him on his current meds and that we would not be adding any more. This worries me a LITTLE bit, cause I was hoping to start the Vig wean sooner rather than later, but they agreed we could start a wean or transfer to another med if needed in 6 weeks. That's the follow-up time, six weeks from now.

Told us that if noticed anything at all that was strange, to give them a call, and don't be ashamed to do so...they understand that we will be watching him like a hawk, and are happy to hear from us to either help us cope with a fear or see him in the event we describe anything that concerns them.

So that's it. I went back to RMH to pack the car and clean the room. I'm done. I sit here at RMH, Jen sits at the hospital with Bennett waiting for the discharge to come through. As soon as she calls I will drive over, patient transport will wheel them down and then we are headed to Columbus.

Frankly, I'm stunned, but happy. I'm scared, but hopeful. But I am ready to get my family back together and all be under the same roof tonight. That will be very, very nice indeed.

See you on the other side...

So...Let The Positive Energy Flow, Brutha!


I promised some people in e-mail, in follow-up comments and even via phone that I am going to approach today differently. And thus begins the keeping of that promise.

It's around 8:17 AM as I clack this. Jen got a GREAT night's sleep in the hospital last night, can you believe that? She feels rested. I got a solid near 7 hours last night. Very much needed. Bennett slept most of the night.

I arrived in the room to find both asleep, and Bennett looks good, his swelling is still there but going down some. Time will tell today whether he will be more or less out of it than he was yesterday, but I am guessing that he will be less out of it. Call it hope, call it a hunch.


We need to discuss medications today with the Epi's when they do rounds and also how his EEG looks. BTW...if you want to not go crazy watching EEG's in the room while your recovering child is hooked up? Turn off the monitor. I didn't know you could do that, but you can. I did last night, made a huge difference for everybody, and I am not turning it back on to even peek.

Not that I don't care, because I do. Very much. I'm his father. But I can't do anything about it so I am not going to dwell on that and I am going to just go with my gut and the advice of friends which is this: his EEG is gonna look like shit for a long time, don't sweat that. I won't.


Let's talk seizures. The last seizure cluster I witnessed myself, in person, was a monster 20-minute set on Thursday morning, just before he went into the operating room. Then on Thursday night, he had a 20-minute set of clusters Jen was there for. Friday night, he had a 4 minute set.

Since then? Zero. He's had some staring episodes and the chaotic EEG, but the seizures themselves, the herky-jerky, epileptic movements, have not been seen since Friday night.


I will not be running about declaring 'SEIZURE FREEDOM' in the streets. I am going to be positive, but I am also realistic. I'm not even sure the term can apply...even to life itself. We can ALL have seizures, for many different reasons. What I will say is that it is DAMN nice to have a couple of days go by with no seizure clusters. That, my friends, is a very, very good feeling. Dampened, sadly, over the weekend by yours truly, who was having some emotional control problems.

Like I said, we are on an ongoing journey, and this is but one part of the greater whole, but it is worth letting a giant toothy grin take hold for a minute or two.

FAST FORWARD:
As I was writing this, Bennett sat up in his crib. From that point, around 8:20-ish, until now, he has smiled, babbled, sat up, stood up on his own, and then we even walked him down the hall after putting shoes on his feet. He was a bit wobbly, but he did OK. No zone-outs WHATSOEVER. At least for an hour or so here, he has been the Bennett that I remember.

Clearly HE wants he leads off, we'll see what the Epi team says when they round. I still have not turned on the EEG screen nor do I intend to. I'm done with that for a while. I refuse to be speculative today or pick apart every little detail. We'll discuss all that at rounds. Good news aside from that right at the time of the writing of this is that he is off IV fluids. The boy is eating and drinking.

As many people have reminded me throughout not just this past week but since February, this is a very long, very difficult road, and we are far, far, away from the end. But for me, today, the scenery looks a whole lot better.

Sunday, August 30, 2009

Lack of Consistency

You know what it is that gets me so much? Same thing as always. Lack of consistency. Was thinking about this on my shuttle ride back to one of the saddest places on Earth, the Ronald McDonald House. (By sad I mean just so many families suffering, it blows).

Anyway, Sinead's docs didn't bother with a post OP EEG, saying the chaotic nature of the brain as it heals doesn't give a clear picture. Here they do. Sophie had grids, Bennett did not. And on and on and on...I can never get a baseline of my own to work from.

This fucking disorder is like that. No consistency and it just gets to me.

And the other thing is...I DO NOT KNOW HOW TO FEEL. Bennett hasn't had a seizure in over 36 hours, longest ever. But he's also a zombie right now. How am I supposed to feel? No seizures, but a chaotic EEG? How am I suppose to feel? Responds a little to me, most of the time he's not home. Probably gonna change as time passes, in the meantime HOW AM I SUPPOSED TO FEEL.

They do not give you manuals for this shit. And don't get me wrong, the docs here have been great. This whole week has just been like this whole year...full of unknowns. One answer leads to 10 questions. One door opens another closes. I'm just super, super tired of it.

OK, rant over.

On the plus side...Bennett's eye was a lot less swollen by the end of the day, temp is down again, and he is eating and drinking more. Positives. Positives.

Not a Very Good Day

Bennett is recovering from the surgery but slowly. He did not have any seizures last night, and they have him on a drug called Fosphenytoin. Now, you'd think I'd be jumping for now about the no seizures thing, but this kid has got am EEG that is just off the charts chaotic right now, most of the time.

Yeah he isn't seizing, but that whole chaotic EEG hypsarythmia thing still seems to be here. Is that to be expected as his brain heals? I don't know. The Epileptologist wants to keep monitoring him to see how he responds, I get worried about that kind of talk.

Bennett has been SUPER non-responsive, a few moments here and there, but there are times he looks totally checked out. I think I was spoiled by that four hours of awareness. Since then, he has been mostly zombie-ish.

Still has a low grade fever, still is on leads, and as of tomorrow, Jen and I will be alone with him here. That's gonna be the toughest, because we don't really have answers on why the EEG is so chaotic, no one does.

Truthfully? I am probably being OVERLY pessimistic. But That's where my head is at today. Tomorrow, it might now be. I hope it isn't. He's also finally really swollen. That was another bullet I thought he'd dodged.

More later. Gonna leave he room and let Jen take a nap.

Saturday, August 29, 2009

Another Quickie Non-Update

I say NON-update cause I am just writing in order to be cathartic. Nothing new has gown down.

It was a quiet night in M35. The Ronald McDonald House donated two tickets to the Browns/Titans pre-season football game. I did not have the heart to go, but both grand-Dads went and are still there as of this writing. The grand-Moms went back to their respective hotels and I split to let Jen and Carter get some sleep.

He was out of it, she knew it was a golden opportunity to get some shut eye, so I bolted. I haven't and probably will not be spending any overnights in the hospital. Jen will do that. Then when I arrive in the morning I take over and she comes back here and sleeps as much or as little as she needs to.

She misses being in the rooms for the rounds, but for the most part remembering and relaying details is a strength of mine so she doesn't feel left out. I said FOR THE MOST PART, as I completely forgot that Neuro-Surgery rounded in the AM and had everyone wondering why they had not come by. I thought it was the day before. Time? It is a strange thing in a hospital room.

The Chief Resident came down via special request and went over everything, and when I suddenly remembered that yeah you did tell me all that I humbly apologized for my brain fart. He was a cool guy. Besides, Jen didn't mind, the dude is hot, good eye candy for her. I don't mind. Lookin' at my ugly dome all day has got to get old.

Since my earlier post, there were no changes. Bennett stared eerily a lot. I was deeply, deeply disturbed by it. I was disturbed watching the EEG, which looked like all the others I have seen. Erratic as hell. I mean, looked like a constant state of seizure activity. That was hard too. Could just be what an EEG looks like when a brain is healing, it's just scary as all shit. I've lost it more often today than any other day. And that's saying something, as emotional control has not been my strong suit these past few days. I am so very, VERY worn down and tears are just always just on my face. Almost as natural as my facial hair now.

I thought about trying to sift through all the comments left and individually respond to them, and answer any questions, but you all have been SO supportive and left SO many great things in there it has made it nigh impossible to do so. So I have to take the jackass way out and just say thanks to everyone. I DO read every comment, I really do, and so do many of my family members and friends. We talk about many of you in very glowing, very warm ways.

If there is something you really need to know just e-mail me a note, and I can get back to you on it now. I can get access to most of the e-mail addresses I use at least once a day at the RMH. But know this...thank you all who are trying so hard. I can't tell you what your comments have meant to me. They are like food to a starving man sometimes.

So tomorrow is another day. I am hoping Bennett is more responsive, especially since Carter will be coming up for a visit. My biggest concerns are trying to minimize Carter's freaking out over seeing Bennett in his current state and also trying very hard not to let my five year old son see me break down and cry too hard. I don't mind him seeing some tears, I just have to be sure to be as strong as I can be for him.

After Sunday, Jen and I will be on our own. All the family members will be gone, and we'll have to manage with just each other. So the sooner we can get Bennett out of there the better. I'm hoping it's Tue-Wed, but we'll see. Still lots of twists and turns twixt now and then.

Out of PICU, On to M35

We've moved out of the PICU and into the Epilepsy Monitoring Unit. M35. This is where we stayed before. Bennett, after his seizure last night, got hooked up to leads and is now undergoing a VEEG for 24 hours.

Ugh.

MRI appears clean, no swelling, no bleeding. Maybe his seizures won't happen today, maybe they will. If they do, he's plugged in and we'll get info.

Today has been very hard for me. Harder than the rest. Can't explain why. Yes I can. Bennett has been very non-responsive today. None of the interaction like yesterday. Stares a lot. His face is not really swollen much at all, but he is VERY spacy. That's been harder than usual.

Anyway, I'll keep it brief, I am just bummed so I don't want to be all depressing and shit. Good days. Bad days. Today? Bad day.

There'll be better days. Not sure why today I don't have some of the hopes I had yesterday. Maybe because I am just so unsure of the whole 'is this really gonna work thing?' and I am dwelling on the negative.

I've seen some of the comments have questions, and I'll try to answer some of I can maybe tomorrow.

Remember, if you don't like seeing sutures and stuff, do not scroll down to the photos below.


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Friday, August 28, 2009

More From Cleveland



It's funny, you think you have more time than you actually do. Especially on this day. Lots of caring for the little guy, visitors and some activity in the whole scenario.

Again, brief as I can be, but I'm not trying to write literature here as much as I am trying to get facts to people.

THE GOOD:
Bennett is healing well. His body is strong, his will is strong. Today he was awake, and aware, for a while, and doing 'Bennett' type things. He has full movement in all extremities and is using them all. He tracked well with his eyes, he sucked his thumb and played with his tag, and he babbled. When he eventually looked directly at me and said 'Dadda', I sobbed like a little girl. This was less than 24 hours after his surgery. I was not expecting that.

MORE GOOD: The sutures looked great, whoever stitched him up did a nice job, very clean, very precise work.

THE BAD:
Still having seizures.

Bennett had a ferocious set of seizures at 11:30 PM last night, after I wrote my entry from yesterday. It was not what I expected, I expected a different kind of healing seizure, not a cluster of spasms. The next day, we tried giving him his oral meds, he puked them up. And we had to come up with some alternatives. He is now taking an IV of something like Dilantin but not that, something whose name I did not write down. I was devastated, but remember, my days are full of huge highs and huge lows, but I'll cover all that kind of stuff in recap form.

In addition to the ones last night, he had another set lasting 4 minutes around 5 minutes ago, Jen just called and told me. She wanted me to ask any surgery Moms and Dads out there how many post surgery seizures your children had and were they the same type? This clearly has us very on edge.

Now, the neuro-surgeon has not ruled out that we might not see a few more, that isn't how we judge success/failure of the operation just yet. We need to give that aspect of it some time I am told. But you can only imagine how this makes us feel.

He is still in ICU, running a fever for a while now. Nervous about that. Do not want to see infection. His MRI was today, so far I don't have any answers about what they saw today. Still in a lot of pain and discomfort and all I want to do is hold him and I can't. The wound is still bleeding a little, so they changed the dressing and are keeping him in ICU one more night.

Now...if you are squeamish, now is your chance to bail. Just stop reading, because I am going to show you the photos I took of the changing of the dressing. There is blood. But hell he's my son, and despite all of that he is still beautiful to me. If I can handle it, so can you. But if not, just wait until another post to read further.

USE CAUTION BEFORE SCROLLING DOWN, YOU HAVE BEEN SUFFICIENTLY WARNED.

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Some might question why I would post those. I don't. He is my beautiful son and despite what I see, I still see that beauty and I see hope and potential in that pain and disturbing imagery. If we can just figure out if these post op seizures can end. They need to. Soon. Is it intense? Sure. But I have always put it out there and always will.

At the end of the day, always be true to who you are.

By the way, I'd recommend the Cleveland Clinic to ANYONE wanting to have their child taken care of for a condition such as epilepsy. They REALLY know what they are doing and man they were all pros about their jobs and roles. It has been uncanny.

And now, I am going to go collapse in a heap, I'm exhausted.

Thursday, August 27, 2009

Good Night Bennett...


This is how Bennett looks tonight. He is in the PICU with Jen, and I am in the RMH just waiting for some sleep med to kick in to settle me down enough to get some z's before heading back over.

Trust me, I'll do a picture marathon, have huge thoughts and stories about how it all went down, but this shit, while it's going on? Wipes you RIGHT out. I am zonked. Can't tell you how many tears have streaked down my face. Tears of sadness, tears of hope, all kinds.

Anyway, what a day, huh? Good night Bennett...I can't wait to pick you up again and see you smile. And Carter? Miss you too bud. A ton.

Until tomorrow...

Oh and Holli, not all surgeries need the grid placemets long term, Sophie had a unique experience, and required grids, other cases do not. I think that Sinead's girl Emma did not have the grids but had a study like what Bennett got.

Surgery Update 3: PICU

Out of surgery, up into the Pediatric ICU for recovery.

First and foremost? Liz...I am sorry. That's heartbreaking news for me to hear. I hope maybe he was able to give some possible medical solutions to go down. I'll get with you later, but I just wanted to say that I caught your note and my thoughts are with you.

I'm fried, and it's only 4:10 PM on Day Two. Wow.

Nothing in life could ever have prepared me for seeing Bennett after the surgery. Sinead, Elaine you did your best, and I'll always love that you tried. But wow...hard to see your flesh and blood like this. And yes, I am a twisted freak, I took photos. And will continue to.

But back to quick facts. Bennett is out of surgery. Recovering well, everything is stable. He is not conscious, but we sit at the bed and try and talk to him in case maybe it soothes him. We are working on trying to figure out what medications we can give him (non-orally) to stop any seizures that might happen.

Preliminary read on what was in there. They did find evidence of the Cortical Dysplasia, they did find evidence of ganglioglioma, a tumor type that is very rarely malignant. That will be determined through a real pathology exam over the next couple of days. If it is the non-malignant type then the key to whether or not it returns is how well the removal was today. That is something that will be monitored. Another MRI is scheduled for tomorrow, and after that he possibly will be well enough to go to a regular room.

An important key point here. They did some kind of EEG test, sort of like a grid thing, during the surgery. I do not know what that is called but will later. With this test, they were able to positively identify the area they removed as THE FOCAL POINT of the seizure activity.

There's a lot of reason to be hopeful here. There's a lot of reason to be scared too. We don't know if we've beaten anything. Why am I saying this? Because I need to be certain I stress that this is only one stop on a journey and we still have a long way to go. Hell, I don't know if the seizures are gone, what he will remember, I know very very little. So yes, there is reason to be hopeful, but always remember the words of The Wolf.

But I do know that the surgery is over, he is in recovery and he is as comfortable as he can be all things considered. Me and Jen? Tired, stressed, but cautiously optimistic.

Sorry to keep stringing people along, but it's been hard to get access, a lot more goes on that I realized as far as dealing with a day of surgery on your child. And a lot of what you know is what I know, just that he's stable, he's resting and we'll be with him very step of the way.

More later as I can get to it. Apologies for not being able to answer any of the individual comments. But thanks for the support, means a great deal.

Surgery Update 2: 2 Hours In

Just got a beeper message. Fairly simple. Bennett is still in the OR, the message on the beeper is that things are going fine. It's just a heads up to let us know that as of right now there aren't any complications going on. We won't get much more for a while, but will update when I get a chance to.

Truthfully? This part is kind of easy. Like being on a plane. I can't really leave the area, like a plane, someone else is at the controls, so I have no ability to affect the outcome. All I can do is wait for each next step. So until we land, not much to do but read and wait.

Having access to the public wireless server is great, but no access to my e-mail because of the public nature of the wireless. Bummer.

Anyway, more tired than stressed, up since 3:30 AM, but still hanging tight.

Surgery Update 1: It Has Begun

Keeping it brief, but Bennett's surgery has started. We actually have a little beeper/pager that gives us updates and stuff, and it said that his surgery had begun at 9:15 AM. We went in there at 6:00 AM to start all the stuff, and around 7:30 AM or so I hugged him and kissed him and let him go. Jen went back with him, they only allowed one parent back there until the child gets put under.

Now...we wait. I have to transfer our belongings from the hotel to the RMH in the next hour or so, and his surgery will last around 2-3 hours at least I would expect. No news yet, but when I get some I will leave another update when I can.

Thanks for the well-wishes and the blogs (which I have only been able to glance at thus far), they are all very appreciated.

Back soon...


Wednesday, August 26, 2009

A Brief Update

So far, surgery is a go for tomorrow.

Today was full of pre-op tests, a lot of running around. Bennett did great as he always does.

I had planned a re-cap of the day, talking about how this all feels and what it's like, but I have to be honest. All I want to do is spend the next few hours with my son, holding him and playing with him.

I'm scared to death about tomorrow, no brain surgery is ever simple, even though it happens every day. This will be the most difficult day of my adult life. I will post updates, they will probably be brief, but I'll do the best I can. You know at some point I will have some verbal diarrhea and start clacking away.

In the meantime, we're gonna spend the rest of the evening together and try not to think about anything at all.

Tuesday, August 25, 2009

On the Road Again


As I write this, I am a bundle of nervous energy. By the time you read it (it's scheduled to go live this afternoon), I'll probably be calmer, because I'll be en route to Cleveland Clinic, for this week's surgery with Bennett. It's much easier to cope when I have tasks like driving, checking in to a hotel, etc. to focus on.

To recap: Bennett is having a Temporal Lobectomy to remove a brain tumor/cortical dysplasia that has been causing him devastating seizures, resulting in a regression developmentally (cognitively speaking) to essentially that of an 8-9 month old. Goal? Remove the problem areas, rule out malignancy through pathology, stop the seizures. This surgery might allow him a chance to learn like anybody else does if it is successful in stopping the seizures, though it's success in that area will only truthfully be able to be measured over time.


Now, people have asked for specific addresses and locations. First of all, you don't need to send a thing. I appreciate it, but it is absolutely not necessary. But if you decide to, you'll have to call up the Cleveland Clinic yourself and get info on how to get your package to Bennett. I know he will be in the ICU for recovery for at least a day, maybe 2, then he gets moved, to a Pediatric floor most likely, but I do not know which. So if you plan to send anything, I am sure there is someone you can phone at Cleveland Clinic who specializes in locating patients. Patient's name is Bennett Lilly.

But remember, it isn't necessary or expected and you can always just continue to show support the way you always have, through e-mail, phone calls, Blogger, Facebook or wherever else we may communicate.

As for Jen and I, we will be spending the first couple of days in a hotel as we try to get into the RMH. Not sure about all that. Bennett, tomorrow, has an MRI, feducial marker placement, some lab work and other stuff scheduled. Thursday morning, at around 6:00 AM or so, we arrive at the surgery unit to hand him over.

Then? It's out of our hands until we get to go see him later that afternoon in recovery.

I will update as much as I can. I will walk you through it as much as I can. I know many people feel connected to this, and I will do my best to be sure you are not out of the loop. Forgive the impersonal nature of blogging instead of calling and so forth (to those with whom I have that kind of relationship). This, as it has turned out over the past six months, has been the single easiest way to update a LOT of people, and certainly the fastest.

Smoke 'em if you got 'em...it's gonna be a long, difficult week...



Monday, August 24, 2009

Do You Believe in Jinxes?

I might. Not sure. But after typing on Sunday that Bennett's seizures had actually lessened in severity and frequency and laughing at the irony of it, I find myself as far away from laughing as a man can be. I Jinxed our good fortune.

Since that time, I have witnessed three of the most horrific sets of seizures he has ever had. EVER. Just saw another one. If it had gone on one more minute I was going to go for the Diastat, something I have yet to do.

These aren't just 'salaam' type jack-knife types, there is something more to them, hard to describe. A violent, sustained convulsion, bending backwards not forwards, strange grunts. Then another, but this one more like the ones I've seen before. Then two quick bursts, then leaning WAY back, arms stiffening, moaning. Then pause, then more of the same. Pause. Something different.

I want to he hopeful. I really do. About this week and about this surgery. But I'm not right now. I'm too weak, too wiped out mentally to hope. I can't shake this awful feeling of...what's the word I am looking for...dread. I have got to figure out a way to switch it off. Or I'm toast mentally.

Anyway...Jen and Carter went out for some Mom/Kid time since we won't be seeing him for a week (at least) after tomorrow. Bennett is post-ictal on his mini-sofa, totally out, and I sit here clacking at the keyboard.

That's the latest...maybe I'm hoping I'll reverse the Jinx. Now that I have talked about how bad these seizures have been, maybe they'll weaken to make me eat my words.

The First Snag


So we need to head up tomorrow to the Cleveland Clinic to get our boy some of that awesome Brain Surgery. In order to get a room at the nearby Ronald McDonald House, you have to call at 2:00PM the day before you need the room and try to get the room. No reservations. It's a shitty system, but I get why it's there.

So, my first fuck up of the week. And it's early, I expect many more. I forget to call at 2:00PM. I call at 2:50PM when Jennifer reminds me. No rooms. Wait list. Can't really say when a room is gonna open up, but they have our info and we call tomorrow and ask if one opened up, meantime probably gonna have to pay a nice chunk of change to go back to the same hotel we were at before. Wait list was 'fairly substantial', says the pleasant sounding woman on the other end of the phone.

I am a very peculiar person. I like to have order in my life. Especially when it comes to going somewhere. I want to get there and unpack, and make that place my little 'cave' for the duration. Make it feel like 'home'. Shit, I take stuff I DO NOT EVEN NEED just so that I can set it around the area so it feels more familiar.


Call it an OCD thing, call it whatever you want. But now? Now that I have to pack the car, then unpack it at a hotel, stay in said hotel but not unpack any of my stuff and essentially wait until we get 'IN' to the RMH, for me, that's a big deal.

I like plans...I hate uncertainty.

Hey, I've got some issues, what can I say?

Though it is ironic that uncertainty and inability to really make definitive plans applies to every aspect of my life right now and it is driving me fucking crazy, cause it SO goes against how I am constructed as a human being. Bennett, home life, job, my health...everything just swirling around in the air, it's frustrating as shit.

This RMH thing? Par for the course. The old me, the one that had a firmer footing on order, would NEVER HAVE FORGOTTEN TO CALL at 2:00PM. NEVER. The new me? The one with the clenched teeth, throwing all kinds of shit in the air while trying not to come apart? He forgets that call because he's too busy trying to remember the OTHER things he is usually right on top of.


Yeah, yeah...stop being so hard on yourself, Lilly. I get it. My momma din't raise no dummy.

I'm just pissed because I crave order, and 2009 has been serving me up a steaming plate of chaos since February and it doesn't look like the menu is gonna change for a while.

OUT...

Sunday, August 23, 2009

Tick Tock...Tick Tock


So is this how it's going to be? For the next few days? Just a bone-jarring sense of each click of the second hand on the clock? It's excruciating. I've been trying, over this weekend, to keep myself as busy as I can possibly be. Tons of stuff that I had left undone to have at the ready should I be in need of distraction.

And I'm doing all of it, and yet, there it is, that tickle in the back of my mind, that reminder that in 4 days I will be pacing in a surgical waiting room while some people dig around inside my kid's skull. No matter what I try to do to take my mind off of it, I think of little else.


Bennett did up at the Urgent Care today, and it had nothing to do with his tumor or his dysplasia or his seizures. He pushed himself with his feet away from the table and the chair he was in toppled over, and he smacked his face in the same general location as his last black eye (which had almost healed by the way).

There was some blood, though he was pretty at ease for a kid who just got a cut near his eye, very little crying. The cut, while not overly serious, was worth a trip to the Urgent Care to use some skin glue to make sure the laceration stayed closed and healed fast. They did the usual checks for concussive behavior, there were none. That was around 2 PM Sunday. As of 6:30 PM he is acting just like he always does.

One odd thing to report, and this is what always fucking just blows me mind into bits. His seizures are starting to diminish in intensity and frequency. So, we got this full-on brain surgery going down, and the week of the surgery the seizures decide to calm down? I mean, you gotta be shittin' me right? I needed some OTHER reason to second guess my decision to let someone slice open my son's head?

I shake my head and chuckle at that. Sometimes, the ironies of life just have to be laughed at.


Thursday, August 20, 2009

So What Now?


I was reading a blog post the other day about Blog Etiquette, or Rules of Good Blogging and some such, and one of the rules was to keep it simple, to keep it brief. Suggested that the longer your posts are the less people are likely to read them. That's a rule I violate BIG time all the time. If there is one thing I know about myself and writing...I am one wordy motherfucker.

So just warning you in advance. This one is really long. It's a commitment. And I'll understand if you just wanna be friends.

Some people have been asking me about Bennett, more specifically, how did things go this past Tuesday and what's the plan with him? Figure...what the hell, now is as good a time as any for a summary of where we are today. Gets people up to speed, and gets people ready for what's to come.

A few weeks back we had Bennett undergo some additional testing at Cleveland Clinic, to see if it would be possible to stop his seizures with surgery. Oftentimes, if you can find a focus, that place where a seizure 'starts', in the brain, and take that out, you can possibly cure the patient from having any seizures at all, or at least dramatically reduce the quantity and severity of those seizures.

I've gone over those tests and the results before in much greater detail, but the summary was that the team that reviewed all the evidence on Bennett's condition believed that not only was surgery an option, it was urgently recommended, because some of the evidence has suggested a brain tumor in addition to or instead of the previously diagnosed Cortical Dysplasia.

Although it is important to also point out that some of the evidence did not support this section of his brain as THE FOCAL POINT, so there is a wrinkle there. Nothing in these situations is so A to B to C.


Surgery is scheduled for August 27th, and we went up this past Tuesday to meet the surgeon, go over what was going down, get some info. Essentially Bennett really did not need to be there, but the surgeon, Dr. Bingaman, wanted to see him while he talked to us.

We got the full explanation about why he thinks this is more likely a tumor than just Cortical Dysplasia (though he isn't ruling out CD completely, might be a Combo Pack), what the procedure would be like, what the risks were, etc. Just so you know, Bennett will be undergoing what is called a Temporal Lobectomy. They use a question mark shaped incision, probably in this location or close.


Actually, much of what Dr. Bingaman told us you can see here, in a video on Resective Surgery from The Epilepsy Therapy Project. It's very informative, though generalized.



Pretty nifty, this whole Internet thing, ain't it? The things you can so easily learn about. Wanna learn more? Of course you do...because you, like me, might be wondering...but what are the risks to that cute little guy? I mean, this is BRAIN SURGERY fer cryin' out loud!

You ask? I provide.



...and don't forget Part II. It's no The Empire Strikes Back, but it's a decent follow-up.



Essentially, what you just learned in these videos? I learned in a very warm, under-air-conditioned office this past Tuesday.

Now, that's the fact stuff.

How do I feel?

I'm scared. I'm nervous. I'm anxious. It is not an easy thing to picture your child's brain getting sucked out of his head. It is not an easy thing to contemplate any percent chance, no matter how small, of your child dying because of something you decided on his behalf. It is not an easy thing to think about him having a stroke, or of causing a new complication in his condition because of a failed surgery that you agreed to.

I'm nervous about this whole tumor angle. If it is something along the lines of a Dysembryoplastic Neuroepithelial Tumor, we're good. Those don't come back, they aren't malignant, and they are often a tumor type that can be found along with Cortical Dysplasia. If it's something else...well, then it's something else. That's freaky.

But overall, when it comes to the surgery itself, I have to consider Bennett to be one of the 'lucky' ones. I know plenty of parents who watch their sons and daughters have seizures every day too who are hoping to, one day, be in a position where they are waiting for a surgical date to arrive. So I do understand it from that perspective. While terrifying, it is also certainly comforting to at least have this as an option.

Funny thing is that I am most nervous not about the procedure, but what lies just beyond the procedure. How will I handle those days? What will Bennett be like? Will he be OK? Will he be like the Bennett I know today? Will there be any issues with him being able to walk, or see, or do the things he does right now?

Will he be in a lot of pain? How will I know? Will his seizures actually stop? Will he be able to learn? Will he be able to get back what he's lost? Because as of today? Words are pretty much gone. Even getting him to mimic now is next to impossible. Will that change after the surgery?

He doesn't talk, but he is engaging and sociable now. He laughs a lot. He smiles a lot. What if after the surgery he doesn't do those things anymore? What if something goes wrong and he doesn't express those emotions anymore? What if his personality changes into something I don't recognize?

But one of my greatest fears? And I am almost embarrassed to admit this, because I find it to be extremely selfish on my part...What if, after he wakes up, he doesn't remember me? What is he doesn't remember that I am his Dad?

It's crazy, after six months I have found a way to live my life with my son's seizures being a part of my daily existence. Somehow, and I can't for the life of me explain it, in these past six months, while I haven't accepted them, while I still hate them, while they still make me angry and tearful and upset, somehow I have learned to navigate each day to the point where they have become a part of my routine. I EXPECT THEM. I KNOW THEM. I AM FAMILIAR WITH THEM.

But now? What lies ahead are a bunch of unknowns, and what is not known is generally feared. If his seizures go away after the surgery, that will be awesome. Really awesome. It is certainly what I am hoping for and what any parent would hope for. It is certainly the goal of the surgery...stop the seizures. Give the boy a chance.

But the truth is, the journey isn't really over then...is it? Is it ever? Because there are so many variables we can't really know about when it comes to his brain. And that's the thing that has me tripped up. I longed for this, I wanted this, I really looked forward to having a shot at a surgical solution to make the seizures stop. And now that we have that? It's beyond frightening because I never thought about what happens after that.

Now it's all I can think about.

I'll get by, somehow. As each day comes I get more and more nervous, but I'll figure out a way through it. I always have before, I will again. I'll write a lot I'm sure. Some of it may be stupid, filler garbage, some of it might have a kernel of insight in it. I don't know.

I have this wishful image in my head sometimes, this fantasy...in it I see Bennett, grown up, laying beside some woman, some new Mrs. Lilly. They're holding each other, laughing, talking, and the new Mrs. Lilly reaches up and runs her finger along the length of the scar that has now become so visible since Bennett has lost most of his hair like his Dad did. He touches her hand and she pulls it back because she thinks her action has bothered him.

She tells him she's sorry. He tells her not to be, he just wanted to hold her hand. This scar, he explains, it's just a part of who I am. In fact, to me it will always be a gift...a reminder to treasure the life I've had. It will always represent, to me, an opportunity that eventually allowed me to be right here, right now, in this place...with you.

It's a good wish. It's a good dream. Maybe it can come true. But the only way I'll ever know it is to get through the next seven days.

OUT...

Kubrick Oddities


My love for Kubrick figures is so great, that often I'll buy some Kubrick stuff that I am not even all that into. That's the nature of collecting stuff like this, you end up in a dry spell with no Star Wars Kubrick figures coming out and no other genre-type Kubrick figures and so you just sort of pick something up you normally wouldn't just because it's there and you need your fix of the plastic crack.

That addiction is the only real way I can explain my purchase of this item.


It's a 2-pack of a Kubrick and a Be@rbrick from the movie Sweeney Todd: The Demon Barber of Fleet Street. A film I have never seen, and one that I probably will never see. And I love Depp, and Burton, but I have a thing about musicals...they are tough for me to sit through. No reason why that I know of, I just get taken out of the moment when people break into song.

But, there weren't any other Kubrick sets out there that I really wanted, and found it at a good price. Found this one at a good price too, and I cannot find anything on Google that explains just what the heck it was for. Clearly, it is a set for Nike, but what the HELL is it?




Couldn't even tell you what these are supposed to be or what they are for, but hey, they are Kubrick figures, what can I say? Kubrick figures are like the horizontal shuffle. Even bad nookie is better than no nookie at all.

OUT...


Wednesday, August 19, 2009

Epilepsy 101: Gen Seizures and Seizure Provoking Meds

Yesterday (Tuesday) we had our meeting with the surgeon at Cleveland Clinic, but since I'm writing this on Saturday I am not sure when I will actually be writing that update.

Meantime, back to some educational stuff on Epilepsy with Episode 4: Understanding Generalized Seizures, from the series I've been linking to from the Epilepsy Therapy Project. While Bennett does not experience a 'typical' Generalized Seizure, he does have what is often called a 'secondary generalization' in his EEG readings, and from time to time has the absence style staring described in the video.



I'm told that, even if the surgery in a couple of weeks is successful in stopping the Infantile Spasms seizures that Bennett will still have a high probability of having other seizure types as he moves through life. I can live with that, as long as we also have a chance of controlling them with AED's and he has an opportunity without the IS to learn and grow and maybe catch up to his peers.

Something else I wanted to share. Came across it in one of my many hours spent reading about epilepsy. Some medications, and by that I mean non-AED medications, can possibly cause seizures. Never ends does it? And the thing is nobody really knows all this shit, I mean the Pediatricians, so WE have to be the ones who learn it all.

Here's the article itself and here's the link to a PDF of the meds list. Interesting to see Ritalin and Concerta on there, since a lot of kids might beat their seizures early on but might have an ADD thing and then these drugs have a shot at causing a breakthrough seizure.

Definitely made me think of Jen and her family only because I know her son has battled both Epilepsy and ADD. I know they've tried Adderall XR (I was on that for a while) and Vyvanse (which I just started taking for the first time Saturday, August 15...yes, as I write this, today was my first dose), but not sure if they've tried the Concerta or Ritalin.

Anyway, important stuff all around to know.

Tuesday, August 18, 2009

Artists Alley: Alberto Vargas


Yeah, yeah...I know most of you come here for either some info on my son Bennett's Infantile Spasms or to see what kind of toy junk I am going to show, but you can't blame a guy for trying to be diverse and expose you to things you don't normally see in your daily life.

That's what inspired the creation of these Artists Alley segments in the first place, to get you to look at some freakin' cool art. And even though AA is the LEAST viewed and least commented upon section of this blog, I gotta keep doing it. Call it a creative compulsion.

In addition to exposing you to art by linking you up to an artist you can find on deviantART, I also from time to time want to show you the art of some folks who aren't on DA for whatever reason or artists who might not even be around anymore.

By now, if you actually read these AA blogs, you know how into comic book art I am...it's probably one of my favorite types of art. I'm not limited to just that style though, there are lots of other types of work I get into. One of those things is art of Pin-Up Girls, also known as 'Cheesecake'. But not just any 'Cheesecake', I prefer much of it to have a more vintage flavor.

Don't get me wrong, I dig Adam Hughes and J. Scott Campbell, Joe Chiodo and so MANY other guys in the world of comics known for how they render ze wimmens, but I SERIOUSLY go for the vintage stuff. I have NO idea why, I just like it. And while the photography is always cool of the Pin-Up Girl, it's the ART of the Pin-Up Girl that I dig the most.

I don't think you can even begin a discussion about Vintage Pin-Up Girl art without the first name out of your mouth being Alberto Vargas. While maybe not the first, and ABSOLUTELY not my favorite, he is probably the most renowned from his era, I don’t think anyone is completely unfamiliar with his work. I tend to believe most people at some time in their life in this country my age or older have seen one of his paintings somewhere.

Alberto Vargas came to the United States in 1916 after studying art in Europe prior to World War I. His early career included work as an artist for the Ziegfeld Follies and for many Hollywood studios. Vargas' most famous piece of film work was the poster he painted for the 1933 film The Sin of Nora Moran, which shows a scantily-clad Zita Johann (The Mummy) in a pose of provocative desperation. The poster is often named one of the greatest movie posters ever.


Amazing what was considered outrageous or controversial at one time. Today? This is nothing...NOTHING. But back then it was a big, big deal to show a lady like this.

Vargas reached his greatest level of fame in the 1940's as the creator of iconic World War II era pin-ups for Esquire magazine known as "Varga Girls." These Esquire pin-ups inspired many works of 'nose-art' on various World War II aircraft. Later in the 60's he had a long-running relationship with Playboy that revived his struggling career.

Vargas is regarded as one of the greatest artists in his genre. His work was typically a combination of watercolor and airbrush. The highest achievement in the community of airbrush artistry is the Vargas Award, which shows you how respected the man really is in the history of the genre. A dying genre too, I might add...so much work is done digitally now that the true 'airbrush artist' is something of a dying breed.

Anyway...check out some of my favorite works of Alberto Vargas. Well, scratch that. I can't actually show you my FAVORITES, because I think his best stuff he did in his Playboy era, and that has boobies in it. Exposed boobies. And even though to me it's JUST ART and perfectly reasonable and tasteful, I'm not willing to kick down the door and start having a bunch of nudity here either.








Monday, August 17, 2009

No Man's Land



I suck at being a Real Man.

Oh sure, I used to be able to put away the brew and suck down a pack of Marlboro like the rest of 'em, but I don't mean that type of Real Man. I'm talking about the type of man who does home repair, fixes their own car, has a garage with peg board on it with all kinds of tools, does their own landscaping...you know, a guy who does things that most guys can do.

I guess you are destined to have certain skill sets and paths.

I can draw, I can design, I can paint.

I can use a computer, some basic cooking, organizational stuff and junk like that. But when it comes to the get your hands dirty kind of stuff, I suck. This used to bug me, not so much anymore, though it does creep in from time to time, like when I see my neighbor's house with all this beautiful work they did to it recently and we still haven't even laid down any mulch at all this year.


Now granted, this year, we get a pass. All the neighbors recognize that this summer we are NOT focused on any sort of lawn beautification projects. Our yard is sort of the blight of the surrounding houses, Blight might be too strong a word, I keep it mowed and it has bare minimum landscaping, but others go apeshit with theirs, so ours just looks ho-hum.

I found myself apologizing a while back to my next door neighbor for it, he very politely said Don't worry about it you have something much bigger to worry about. He is a teacher for Special Needs kids. He knows some of what we are into, and though his own kids are not SN, he does get 'it' more than some others.

But still, I know that the reason it is not being done (in addition to our distractions) is also my own fear of tackling projects of this sort. I fear what I do not know how to do well, and I do not know how to do that stuff well. Never been taught, never taught myself.


Are there 'Man Classes'? Like basic junk? Probably not.

We have this eyesore of a sewer access thingie in our yard. County never took care of it, which they should have, so we are sort of stuck with it. Been thinking about some possible solutions, and we actually have one, and while I can take a photo of the area, go in to the computer, play with it and show what I want to have done, I don't actually know much about how to DO the real work.


Gonna maybe put a fake rock over it. The plan was to do it this year, but the whole Bennett thing puts that on hold. They are NOT cheap at all...like a good one is maybe several hundred, and our out of pocket is just too big this year. That and the fact that we'll also need to spend some dough on bushes, mulch, tools and junk, maybe a tree, to really get the area to look right.


Of course, one of my biggest fears is that my two boys are going to be even MORE lost than I am when it comes to this stuff. I don't know how to even teach them when I don't have the skills.

One thing about the pressure of even feeling this way is a direct result of living in a traditional 'neighborhood'. It is something I really did not want to do, but circumstances kind of played out to where we bought this house, this monster sized beast of a house, when we shouldn't have. Long story. But we did it, and now I would give anything, ANYTHING, to be able to sell this monster. If I could just get out of it without owing anything. If we could break even and get into a smaller, more reasonable home, a lot more secluded, I'd do it in a SECOND.

Now don't get me wrong, it's a very lovely, very beautiful home. I am grateful I get to live in a house like this. I just want something that is...I don't know...more basic. Simpler. Smaller. Something more matched to our personalities. And secluded.

Of course, no time to investigate that as a possibility and the market just isn't there, but maybe someday. One thing at a time...gotta figure out the Kid situation and how all that will play out before any OTHER 'Life' decisions can really be explored.