BST20: Wow, I did not know it could multiply that fast.


I've got a problem. Now no one knew I had this problem before the shunt surgery. They all figured that the fevers and whatnot were because of the pressure on my brain. Ask my mother, she will tell you like she told the doctors, "His brain can't handle any pressure."

S'true too.

The shunt valve was wide open. The widest setting they have for maximum flow. And yet the fevers did not end.

At this point I was on my 11th day in the hospital, and I had no infection.

Bloodwork, bloodwork, poking and prodding by the In.Fectio.us disease team. More on them in a few days, fun group. Hey, guess what - I was not discharging the Dilantin. It had just continued to build in my body till the levels were off the charts. And as if that was not enough, I was having an allergic-type reaction to it. Apparently my body had decided to go storing it for the winter. It was as if the first dose was all that was needed to keep my body going for the time I was there, and the rest was just being stored for later. But in quantity, I was having a problem with the stuff. One pill I probably would have been fine, its when its one pill a day for 11 days you get worry.

Oh - and my left side was still shot beyond belief. Like a whale missing one fin, I felt like I was constantly rolling over.

But wait - it would not last long, could not last long. The therapists were due any day now.

Although I did have one guilty pleasure. I had a massage therapist.

more later....


BST19: Whose room is this anyway?

Allright, sorry about that folks - just needed some more coffee.
To catch the story up, here are some plot points that will be condensed for the sake of brevity:

  • The drain in my brain was making me insane: Well no not technically, the drain had to be kept level with my ears to work properly. Easy to do with me being in bed all the time, but then there comes those ineveitible times when I have to actually get out of the bed to use the restroom. Yep, my strength came back in my left side with a vengance, mostly. The feeling of the whole side was still of near non-existence, but the strength was there. Anyway, when I had to use the facilities - a nurse would come in, clamp off the valve on the drain, help me out with the whole getting in the bathroom thing, then unclamp the drain when I was back in bed. One nurse did not do this last crucial part. I remember sitting there listening to my parents talk and watching the tv, when suddenly - I felt like I was sinking backwards into my body. I was barely able to actually talk, but managed to tell my mother what I was feeling. She went and got a nurse, who checked the valve and opened it. That nurse went and found my neurosurgeon who was doing his rounds, and the next thing I know - I hear his voice booming out over the halls. I dont remember what he said (which is probably a good thing), but I do remember the sound of his doom-filled footsteps as he made his way to the nurses station, and found the nurse responsible. What followed was not pretty, but showed that the man gave a damn, loudly. He then came in an apologized, checked me out, and noted the event in his records. When the valve had been reopened, quite a bit of brainjuice came out. This was to be an important fact.
  • I had began taking nightly walks. Well, once or twice anyway. Ripping out my IV's and wandering the halls with the brain drain in tow, knowing it had to be kept high. Like walking with a helium baloon. I remember the nurses finding me, and gently shoving me back into bed. Of course, it stopped when the words "one more time and they will have to restrain you to the bed" were heard.
  • the room I was in, was not the room I was in. I woke up one night swearing and angry about being moved into the basement. Another night, another room entirely. Something was affecting me, but no one knew what yet.
  • I was getting fevers. To the point where I had to be iced down a bit to cool off. Showing no signs of infection, but fevers none the less. This launched a Spanish Inquisition. Shaffrey had decided that I needed a shunt. The docs did not want to install said shunt due to fevers. Shunt being issue #1, fevers #2.
  • Issue #1 won out. I had the shunt installed. Although not as nicely as I would have liked to remember it. When it comes to the surgery for the tumor, I do not remember even leaving the room. For the shunt - I was wide awake the whole ride down. I remember lying outside the OR, on my bed talking with the nurse who was accompanying me. I remember telling her that I once heard that shunts can gurgle. Yeah, you heard me. I was doing just fine. I can still sort of remember the conversation the docs were having as they were waiting for me to drop out in the OR itself. I was not happy, I wanted to be gone before I saw an elevator.
  • SPVP Magnetically Programmable Shunt installed. $5k worth of titanium stuck into my skull, for my own well being. The brain started improving instantly. The Fevers? Well that was another story. Oh, and by the by - as a quick fix to get the fevers down enough so they could operate, I had a Motrin IB, suppository style. What fun.
So stay tuned tomorrow as we get to the bottom of these fevers in:

BST20: Attack of the Infectious Disease Team

BST update

will take place eventually tonight. Possibly early tomorrow morning. Im too tired and worn down to type much now.

But I'll finish this, I swear.


BST18a: Not Eddie Murphy in The Golden Child

Allright, yes I am tired.

I just wanted to add one more thing tonight.

Sometimes people get a brain drain. Theyre tired, can't think straight, basically braindead - and admitting it.

I literally had a brain drain. A long piece of tubing, which now leads to a kind of reverse iv bag. Capturing the wonderful thought fluid in my head. So it could be measured.

Now I really hope none of you have to go through this, but incase you do - after they have taken the measurements of how much fluid your kicking out - they dump it.

In the toilet.

Thus the sum total of your lifes thoughts, dreams, and spinal lubricants - it all equates to toilet water.

I found it amusing - but I find many things amusing.

I read somewhere the market value of a human body is roughly $80 bucks if broken down into its base parts. Well, for the next two days we are going to deal with my personal significant increase in bodily value.

And my best efforts to find the nurses station in a hospital built as a test to patients. I think there are still patients wandering around the floors, trying to find the elevators. Well, the right elevators anyway.

Tomorrow: Zen and the art of wandering hospital corridors with your brain drain in tow.

BST18: Why can't I wear my glasses properly?

What? It's an honest question.

I was just happy to have my damn glasses at this point. I could see with clarity again! What junk on TV.. sad.

Ok, lets see where I stand at this point. Having had the surgery, having spent 18-20 hours in NeuroICU (yeah, that really threw me for a loop.), having a pretty speedy time so far, at least the docs said so.

So round about this time is when I noticed I had no use for my left arm. Well, I should not put it that way, what I should say is my left arm was about 75% less effective than it was before the surgery. Come to think of it, my entire left side was pretty odd.

I slept funny, I had to hold onto the railing on the hospital bed while I slept. Right hand gripping left rail as Im sleeping. To try and keep from feeling like, boy - this one is a hard one to describe.

Ok - so they retracted the right side of my brain during surgery. And as we all know, the right and left sides of the brain cross paths in the body. Right controls the left, and vice versa.

Well it seemed as if my right side of the brain was taking a few days off, to recover from the trauma. Which left my left-side nearly useless.

Plus I'm a side-sleeper. Now they had come in the first morning in my room to check up on me, and remove something. Well, I could not see it as it was out my view, but I could feel it as the doctor cut it off of me.

Apparently I had a plastic tube running out of my head on the left side. And on the right. And no, I was not flossing my brain again.

These were to allow for overflow in the brain fluid as it equalized itself again.

So I had to let my glasses perch on my head, no where near the tubes. If I was not careful about which way I leaned in bed, I could feel the remaining tube on my right side pulling. Ever feel something being pulled from your head?


Anyway, time for me to go get ready for work. I will finish this days story off later.


BST17c: Boy did I wrecktify that last title.

Yes, I admit it - I was shot tired when I wrote the last entry. And Im even worse now, so Im going to attempt to be clear and concise when I finish the story of my 3 days/ 24 hours in NeuroICU. Well, again - less than 24 hours.

I have to stress that point, because it leads to one of the most important facts about this whole journey. But that comes in a little while.

So where was I? Ahh yes, the catheter. Boy was that fun. Let me fade back a few days in history to set this whole thing up.

I was, ahem, backed up. The plumbing had stopped working. Had been out of service for at least a week if not longer. That had the docs worried. I can't blame them.

Aside from the fact that the toilet I had in the room was higher, thicker, wider, and more uncomfortable than any toilet I had ever seen, I had no idea why I could not go.
My nurse at the time found this very troubling, echoing what the doctors said.

But she had a solution. I was not for taking any kind of laxative when I was essentially bound to this hospital bed. I told her, a strong cup of coffee will get me going - as it had about twice a month in the past.

Well, she had other designs, unbeknownst to me. Now before I tell you this, understand that this was my favorite nurse. She was the nicest person, kindest soul. You could not want a better nurse than this one. Sad though, I do not remember her name. But I hope she recognizes herself, or at least her cup of "coffee."

Ok - so heres the recipie for (pardon) Whistling Intestines:
1 part apple juice
1 part prune juice
1 part milk of magnesia

Warm in microwave, mix thoroughly.

Well, she handed me a warm cup, full of mostly dark liquid. So what was I supposed to think? Coffee, here it comes! I chugged that cup and asked for another.

I never said I was in my right mind.

Well, you would have thought that would have worked or something, but no. 1 hour later, all I got was a whistle.

Well, more like a screetching howl, but you get the idea.

So I was still backed up. Amazing no?

So when I was in NeuroICU, yes I was confined to my bed. But they were still expecting some movement of some sort.

I fell asleep again, and woke up to bright lights, a new day. They told me I was being sent to my own room again! WOO HOO.. or something like it. My voice was shot, I could not speak. They brought me food. Well, something approximating food.

Apparently, according to the little menu sheet I was able to read, I was on a soft-warm diet. Warm jello, lukewarm tea, stuff like that. No solids. Well, a fascinating meal to say the least.

A large man came into view. He was a nurse, charged with removing the catheter. Poor guy, what a job to have. He jostled me out of bed, somehow had me standing. Did a little thing, talking to me the whole time. Then he says, "Hold on..."

In my memory, it was quick and painless, but odd. Somehow he stomped on the tube, and it popped out.

Enough detail - I know I know.

So back into bed to wait. Then these 2 pixies in nurses assitants clothing sparkled into view. They were going to transport me back to my room. WOO HOO..

They were chatty little sprites, yapping my ears off. Nice to hear after 3 days in the long dark.

They gave me a roll of toilet paper.
Interesting gift for one just out of surgery. Apparently every patient has certain items assigned them. A cup for water, box of tissues, roll of Tp. And what is not used goes with the patient to the next room.

So off with my roll of Tp. Back to the room, where they got me out of bed (again!) so they could change the sheets and all that stuff. I asked to be sat on the edge of the bed so I could look out the window. The pixies left, happily chattering as they went. It would be a few minutes before my mother got to the room to join me. I remember rising up just enough to see out the window and down those 6 stories. I could faintly make out the train tracks below.

I still did not have my glasses, and I was still pissed about it. But I could see, I was still alive. I survived major brain surgery. I cried a little, happy kind of tears. Glad to be alive.

Then my mother came in the room and I was laid back down in the bed. I was not totally sure why I needed all this assistance, as I did not feel much different. Aside from having almost no voice, and extremely clear sinus', there was no major change I could see, aside from the string of christmas lights attached to my arm. Well, that was what I called all the IV lines and monitor lines attached to me.

Little did I know what I looked like. Or what had been done to me.

Tomorrow: BST19: What spaghetti this way comes...

(yes, Im skipping 18, due to the size and complexity of 17. Deal with it - if its important, it will show up later.)

BST17b: Due to the graphic nature of this program, listener discretions has been advised.

Meanwhile... back in NeuroICU... things were beginning to get really strange.

Now I partially recognized the fact that I was in the middle of a full on fantasy. I figured this out when I saw members of my extended family line up out in the hallway, just past the room, and go in through a back door.

About 200 members of my extended family.

I knew something was afoot when I saw my aunt and uncle wave at me, and my grandmother admonish them for being seen. Then, for some reason I noticed for the first time the large curtain-covered wall about 20 feet from the end of my bed. I could hear feet shuffling and whispering from behind the curtain.

Then, suddenly the lights dimmed. The curtain rose. And the music started. A production number, my family was giving me a production number. One that wasn't all that different from the opening to the Muppet Show, a nice touch considering my love for all things Muppet.

Then there were 2 simple tableau, sort of one act plays with a core theme of "Congradulations, you made it through!"

Then there was yet another song - after which I thanked them profusely.

The next thing I knew I was awake, staring off into blurry space. Nothing new or different surrounding me, no vaudevillian routines. Apparently I had nodded off during the last act, and everyone had left. But now I can recall the room was dark again, dramatically lit. And I finally could see where my catheter led. Down across the floor, up a curtained wall, back down the other side and into a toilet.

Like Chutes and Ladders.

It was at this point I assumed I was in night 2 of my stay in NeuroICU.

Because this story spans 3 days in my head, and 1 day in reality - Im going to continue BST17 through tonight.

There will be one more update to it, and then we will move on.

Still so much left to talk about.


BST17a: The long dark night/day/night/day/night of the soul.

So as I was saying, I was not quite right. 1968? Yeah, and I had just found the best way to dodge the draft.

So I partially come to in NeuroICU, when I come to the sudden realization that Im not wearing my glasses. And not only am I not wearing them, they are no where to be found. I was nearly in a panic. Then I found out that my mother had my glasses, and I would not be getting them back till I was out of NeuroICU. Hey, guess what? I was not happy.

What good is it to be in a new place, with all this high tech equipment, a TV, and I can't see a thing? Besides the fact that I could not see too straight as it was, the blur was really annoying.

Then I passed back out again.

/begin weirdness
There was a nurse (of course there was) in the NeuroICU, charged with monitoring and caring for me. She was nice, from what I remember. I hold no grudge against her. But my mind devised a little special insanity for her, well - not directed at her, but she played a key role in it.

Heres what I thought happened: My bed had a little computer attached (it did), which she would occasionally come and check something on. I thought nothing of it. At one point, she came over and told me she was going to be doing something.. I have no idea what, but something. I think I mumbled, or grunted. Whatever. Then the bed began moving. And not as in "I was being taken somewhere" moving, I mean Craftmatic Adjustable bed moving. Then my legs started vibrating, churning. Like the magic moving bed was sucking them in and rolling them around in its mouth.

And the nurse was no where to be found, as far as my horrible vision could see.

This seemed to last roughly 2 hours, and I laid there in a strange kind of horror. Trying to make sense of all this. At some point it occured to me that I must have those leg-massaging sock thingys on, to keep the blood circulating properly. And the bed itself might move slightly to make sure the blood is moving around properly. This calmed me a bit, but then I got angry. Angry because what was happening to me had not been explained in the slightest. And because I could not see.

Fast forward a few hours, and I woke up - the room was dark with the exception of the monitoring equipment. The nurse was in there, or one of the nurses anyway. In my blurred vision I could see the computer they were working on, and to me - it looked like a mock-up of the LCARS system from Star Trek. Yes, you heard me - it looked like the computer screens on the Next Generation Enterprise.

Yes, I have always liked Star Trek, why do you ask?

I remember asking who had designed that system, and was it infact based on the LCARS.
Lets see, I think around this time I had also been told I was catheterized. As my mind searched for a meaning to such a word, it suddenly dawned on me that there was a reason why I did not need to get out of the bed to go to the bathroom. Umm, yeah - never again I tell you.

So the night continued, and I noticed there was a stack of what looked like DVD cases next to the computer, which lit in sequences. Each seemed to have a title. Which I could not read, of course - due to not having my glasses. (my anger has faded over the years, but not the memory)

It seemed at some point that the nurse on duty began playing some video game on the system, through those lit colored boxes. Yeah, I was sane...

So I must have passed out again, because when I woke up - it was the next day. The room was well lit, everyone seemed fairly perky. Must be morning right?

So in scanning my memory, I came to determine that it had been approximately 2 days since the surgery.

Remember now, my surgery only took 6 hours, and I was only in NeuroICU for about 18 hours.

But 2 days had passed, and I still had time to go.

BST17: A misguided attempt to convey the entirety of 24 hours in 3-4 parts.

Yes, that is possibly the most obtuse title I could come up with. And confusing!

What I was basically trying to say is that this is not going to be a one post story.

This is a multiple. One of several posts I will make in the next 24 hours to attempt to tell the story of my 20+ hours in NICU (Neuro-ICU for those playing along at home).

Yes, I know I said I would add more to the previous post, and I will - theres a repetitive theme to that days story which will reappear later.

So lets start from the beginning.

Today is August 7th. It is just past midnight. 3 years ago I was in a hospital room at the University of Virginia Medical Center waiting on my surgery, scheduled for 8am (I think). It is now 17 days post-birthday seizure blowout. In that time I had fallen, threw up, fallen again, went to a hospital where I had an x-ray taken of the space between my chin and my chest.


Got on a train, rode 398 miles from NYC to LYH, got in a car, went to WalMart, fell down, went home to my parents, had a haircut, ate chinese, threw up.


Went to the Good Doctor, went for a CT, went home, went to UVA, went to admissions, went to my room. Blur.....

And now this moment. The waiting, the watching the clock. It all boiled down to this moment. And I don't remember any of it.

For a moment here the dates will seem skewed. Understand please, I had massive surgery, 6 hours worth. They retracted the right lobe of my brain so they could get at the tumor. Which as we came to find out - was stuck right down the middle. Septum Pellucidum if I recall correctly. It was big, about the size of a bab's fist. And we are not talking newborn either. Combine that with the massive amounts of anesthetics I must have been under, and the dilantin effect - and you have one massive time warp.

They used a Dremel on my head!

Easily one of my favorite tools, and they used it on my head! Gave me whats known in the industry as a "burr hole," or as we commoners call it - a dent.

From what I've been told, it was a high-tech affair. Computers, 3D models, lazer sighting line ups with the lifesavers they had previously stuck to my head.

There was me, on the table. Above me was a MRI image on a screen that aligned with my head. That image was 3D, which enabled them to figure out where they needed to be to eradicate the damned thing.

There was very little drama. Just the Good Surgeons careful manuvering around these tiny filaments that connect the left and right side of the brain, for to sever one could lead to something unwanted. What or how bad I do not know, but not good from what I understand.

There is a breif glimmer of rememberance from the time when I left the OR, when the doctors all crowded around me to stir me back to life. They meant well, they really did - but you don't ask a wiseass like me "Do you know where you are?"

I responded, "I should hope so, you have UVA written on EVERYTHING!"

According to my mother, I was not so lucid when they asked me the year. I was born in 1975, in July. For some reason - I told them it was 1968.

Peace, love and brain surgery I guess.

Anyway - theres a ton more to come. Most of it complete fantasy, all of it real.

At least it seemed to be.

More to come, stay tuned...