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Showing posts from August, 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. …

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

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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 differ…

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…

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 c…

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 …

Out of PICU, On to M35

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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 …

More From Cleveland

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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 ent…

Good Night Bennett...

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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 …

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...

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.

On the Road Again

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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. …

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 …

The First Snag

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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 '…

Tick Tock...Tick Tock

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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…

So What Now?

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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, …

Kubrick Oddities

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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 goo…

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 pee…

Artists Alley: Alberto Vargas

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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 ar…

No Man's Land

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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 focus…