Dear Jeffy: ICP Ain't Just a Shitty Band From Detroit Anymore

I've started this post a number of times, trying to decide the tone. I keep finding myself all over the map and I would prefer you not need GPS and a notepad to keep up. I hate to put off beginning the actual post, but I am having such a hard time here. I want to explain things that have happened, without sounding judgmental, without including my own feelings and without turning this post into a history of how I came to be the way that I am. It's more difficult than you might think. So, I will try it this way:

My brother, Jeff (this one) is in Neuro ICU.

On Saturday July 4, 2009, my mother called me numerous times before 8am. At 11:00pm the night before, she heard a funny noise coming from her basement, she went downstairs to discover that Jeff was having a seizure. She called 911, EMS couldn't get him to stop seizing, they transported him to a local hospital, they measured his Intracranial Pressure (ICP) and it was measuring 25mmHg (the normal levels are between 5 and 8. 45-50 indicates brain death). They immediately drilled a hole in his skull to relieve the pressure, this brought his levels down to app. 18. The local hospital transported him to a much bigger hospital and that's where he has been since.

Much of the first day is a blur, no real information as to how this happened or what to expect was given. The doctors were pretty certain he suffered a head trauma and quite certain that he had been bleeding into his brain for about two days. The only thing we could do was recount the previous days and compare notes to see if there was some indication that something was off. There were many. None of which I will talk about in this post, because I can't do it analytically. All I will say is that hindsight is 20/20 and I hope that my brothers prognosis hasn't been altered by assumptions made during the days leading up to the seizure.

As the days have gone by, there hasn't been too much to report. A lot of the same information, every single day:

They lower sedation around 8am and the docs do rounds. He is very agitated and tries to pull the vent and catheter and IV's out. They have had to restrain him. Up until yesterday, they had upgraded to leather restraints. All of this thrashing and battle, but no response to commands. They tell him to wiggle his toes and he doesn't (the first day, they had indicated he could do one foot, but not the other), they tell him to give a thumbs up and he doesn't. Same thing, every day. No decline though.

We get some response from him when we visit, seemingly purposeful movements toward us, looking at us, holding his hand up to us, appearing to try to talk around the tubes down his throat and a few tears that don't seem like random eye waterings to me.

I'm not a "head in the sand" kind of gal. I know what's happening. I know it's likely that he won't be exactly the same ever. I know it's possible that he won't be able to function on his own. I also know it's possible that he will make a good recovery, not full, but good. I say this because I believe they are purposeful movements. I'm one of the most cynical, disbelieving people you will ever meet. One of my mottos is "Expect the worst and be pleasantly surprised", so I am not fooling myself here. I just do not feel like this is the best it gets for him.

Over the last 10 days, we have learned some interesting things at least everyday. We have learned that they had a bolt in his head to measure the ICP, we also learned that when a patient tries to remove it, sometimes they can't get it back in. This was kind of a blessing, because he was reminding me a bit of the Jack in the Box Restaurant character, with a pointy cone off to the side of his head. BUT, they said they were done with it anyway. A lesion in his brain was preventing the bolt from getting a good read. We've learned that every hour they do a neural check, coaxing him to respond to commands and that every two hours they change his position to prevent bed sores. We have learned that his Glasgow Coma Score is actually around an 11 or 12, not a 9 as I had figured in my head. We've learned that part of his thrashing and punching (!) might actually be from alcohol withdrawals and not just the brain injury. And yesterday we learned that sometimes, even after a full week in the ICU, after the injury has peaked at 3 days, sometimes it is necessary to perform emergency neurosurgery to remove the part of the brain that is damaged. AND that, once they remove the part of the skull for the surgery, they put it in a deep freezer and wait 3 months before they put it back in. We learned this when consent was needed at 8am yesterday morning to do this procedure. His brain had swelled, causing a shift that might lead to a stroke if left untreated. The surgery was successful. No additional loss of function most likely, because the area was already damaged and, probably, dead.

Today we learned that a central line can sometimes cause an infection, or at least, that's what we are hoping has caused him to have a high fever the last couple of days. They put in a new central line, but cannot remove the old one until they are certain the new one is well placed. Once they remove the old one, they will send it to the lab to find out if it was causing an infection. Today, I also learned that when part of your skull is missing, the fluid needs to go somewhere and might pool around your eye socket causing a swelling that is quite shocking when one is not prepared for it. Today, we learned that, along with the brain injury, the origin of which we still do not know, there is also a fracture of two vertebrae in his neck. WHAT THE FUCK HAPPENED TO MY BROTHER??

I'm not expecting to ever find out, but if we do, I will be pleasantly surprised.

Penis, Circumcision, Vagina, Boobs and Gorillas

This is a test
A what?
A test
A what
A test
Oh, a test

(Throwback to one of the first plays I was ever in. Not too many people get it, but whenever I hear someone say "This is a test" or "This is a book", the above dialogue goes through my head. If you've done the exercise, you and I are now equally dorky. SWEET!) Ahem, I digress...

Kim at Yellow Trash Diaries has a theory and I am testing it.

Would you like to begin?

1) My son's PENIS is not CIRCUMCISED. I do not wish to start a cause here. It was a decision Husband and I made and, should Wee One ever regret our decision, he can always reverse it.
2) Husband had back surgery four weeks ago today. The morning of his surgery, I asked his surgeon (whom I shall dub "Mr. Fantastic-And-Kinda-Hot-Too") when he would be able to "perform" again. Mr. FAKHT said two weeks. No shit - two weeks plus two days later, Husband confirmed that his PENIS works. He feels much better about the surgery now. I think he thought it was going to take his ability to get laid away. Really dodged a bullet there, sweetheart...
3) I still have VAGINA Knives. I have no idea what the pain is, but it didn't go away with my hCG levels. Hurts like a bitch, but it's not as frequent as when I was prego.
4) About my BOOBS: They are working for a livin... but they aren't as productive as I think they should be. I've given them some performance enhancing Fenugreek, but I still am not convinced they are working at the pace I would prefer. And you're welcome if that song is in your head now (whoa-oh-whoa workin for a livin...)
5) GORILLAS. I got nothin. Just wanted to include it.
6) Also, I am in love with Gene Simmons Family Jewels. Truly. I've never been a HUGE Kiss fan, I mean, everyone loves a little Detroit Rock City, but I never had an interest in the show until I accidentally watched an episode the other night (the one where he takes a lie detector test for Shannon). And now, oh yes, it has been programmed on my DVR. Alongside Kathy Griffin and Tori Spelling because I love women who have an enormous Homosexual fan base.

Those are my thoughts.
Your what?
My thoughts
Your what?
My thoughts
Oh your thoughts

Fenugreek and Me

Started taking Fenugreek yesterday to increase my milk supply. If Wee One wasn't busy going clockwise through my office pulling everything down, I'd tell you about it.

Seriously, he started at one side of the room and as I've moved things, he just keeps moving around the room looking for things. He's also begun that wonderful stage of separation anxiety. I wasn't sure until today. I also didn't know it would affect his sleep. HOLY SHIT! I went from having this perfect sleeper to He Who Won't Stop Screaming From His Crib overnight. Sigh.

Gotta go, CD's are toppling....

Husband Update

Husband had surgery on his spine a little over two weeks ago. Decompression and fusion of L4 and L5. The first few days were very rough for him, he had consistent agonizing pain that didn't seem to be touched by narcotics. Finally on Day 4 of the writhing, the day they were to discharge him, they gave him a shot of steroids to relieve some of the pain in his sciatic nerve. Apparently they had angered the fellow during surgery and the pain that couldn't be touched with Vicodin, Oxycodone and the overdose of Dilaudid suddenly disappeared. Awesome. For three days I felt like I was sitting at the death bed of a loved one and poof, all better. Well, as better as one can get after that surgery.

He is doing well, better than expected. he can walk long distances and is down to three Vicodin a day. He still has restrictions on lifting, bending and twisting, none of which he will be able to do until August 21 (not that I'm counting down or anything). He can grill, he can drive and we bought him the Gopher III over the weekend, so now I don't have to run out of my office and pick things up for him AND he can help put away Wee One's toys. He's getting to be pretty self sufficient, but can't really help with the baby or the house cleaning and, obviously, can't work until he's fully recovered.

To deal with the stresses of feeling like I'm going it alone, I made up with my friend the anti-depressant. We've come to an understanding: I will continue to put up with it's silly side effects and it will help me cope with the rage I feel every night. It's working for us. As to the stuff that needs to get done, I won't lie to you... if my house is clean when you come over, it's because I knew you were coming or someone else had pity on our son and didn't want to see him crawling through dust bunnies anymore. If my vehicle is in the driveway, it's because I managed to pay the bill the day before it got repossessed. And if I have electricity and gas service, it's only because I slipped a twenty to the tech who came out to turn it off. I'm barely keeping my shit together most days. But, my Husband is recovering BEAUTIFULLY and he quit smoking which ROCKS. I do not think now is a good time for me to give up my half a pack a day... the voices in my head have requested I not. So, for all of the naysayers mentioned in the previous post... I must stick my tongue out and blow a raspberry in your general vicinity. And, all things considered... life is good and wonderful!

More Ways To Put Off Important Stuff

Oh crap! I just figured out I can post from my phone. I thought I had an addiction to checking all of my online accounts before, but this might be bordering on 'out of control'. Husband and I got new phones the other day (insert shameless Samsung Instinct plug here), they count as our Mothers and Fathers Day gifts (thank you Wee One!) and now I am more compulsive than ever. Ah shit. I may need an intervention. But let me just check MySpace, Twitter, Facebook and Gmail just one more time first ...

How Inconsiderate Are You?

I would have preferred to have titled this post "How Retarded Are You?", but I don't wish to insult those with mental disabilities and challenges who have MORE compassion and understanding of tact and diplomacy than those Fucking Idiots I am about to strike out against.

Husband has to have surgery on his back. The long and short of it is this: when the baby was born, Husband took off two weeks of work. The day he returned to his physically demanding job, he broke himself. It seems that having gone JUST TWO WEEKS without lifting, bending or pulling caused his body to reject the idea of such labor when he returned to work. He was originally diagnosed with Spina Bifida years ago. His diagnosis at the time the baby was born was Sciatica. He endured 10 weeks of physical therapy, countless insults from his employer and a lot of regrets over not having gone to the Employee clinic when he first injured himself. (He thinks they are morons at the Clinic so he went to his Primary Care Physician, who is also a moron, but less so. We were in the process of changing his PCP, but he couldn't get in in a timely fashion - so now there's a lawsuit with Workers Comp, but I digress...)

Fast forward beyond PT and his new PCP refers him to a Back Specialist. Said Back Specialist tells him that he does NOT have Spina Bifida (as his original PCP diagnosed him with) and he does NOT have Sciatica (as his original AND more recent PCP diagnosed him with AND what the PT was treating), but that he has a Spinal Fracture/Degenerative Disc thing called Spondylolisthesis (Spondy for short) and will require surgery. At this point, our house is nearing the brink of foreclosure because he hasn't had a paycheck in 3 months and we're hiding our cars, just in case. Husband and I decide that the next move has to require him being doped up and returning to work. He gets his work release (Against Medical Advice)for March 5 and on March 2, his employer called him and told him to not worry about returning to work, there were layoffs and he was one of them (no, he was no longer protected by FMLA or Short Term Disability as his protection had lapsed with time and diagnoses). So, he began the unemployment process, and the No Worker Left Behind process. So, now we have time in our schedule to tackle the surgery, as if you really ever find time to have your life interrupted for months, reducing you to asking for help every time you drop something or need to carry anything heavier than 10 pounds.

Surgery to fuse his spine and insert rods is scheduled for the 21st of May and, as such, the topic keeps coming up. Here is just a sampling of responses to the news of his surgery:

a) You'll never be the same. Goodbye. There goes Tony. (SERIOUSLY! From his dad)
b) My "insert relation here" had that surgery and they were worse off after the fact (from any NUMBER of people)
c) Good luck with that (dripping with the sarcasm of someone who believes both a and b above)
d) My father died because of that surgery (a close friend of our family)
e) Ew. Better you than me. That's why I don't go to the doctor (Nameless)
f) My cousin is still in a wheelchair and he had the surgery 3 years ago (Random person who OVERHEARD me telling someone about the surgery)
f) My favorite waited until we were out of earshot and started telling my dad HORROR stories of ALL of the people she knew that had the surgery)

Thank you people. A big FUCKING thank you. Do you not believe that if we had a choice, we would CHOOSE to do this? My Husband cannot walk for long periods of time, cannot stand for long periods of time, cannot sleep well at night, cannot carry our son for more than ten minutes and CANNOT WORK. So, NO WE ARE NOT CHOOSING TO DO THIS BECAUSE IT SEEMS LIKE FUN. We are doing this in hopes that even if he is only 80% better, he will still be 80% better off! We are hoping that with this surgery comes relief from pain. That with this surgery will return a quality of life that has been missing for damned near 8 months! So FUCK YOU! FUCK YOU AND YOUR FUCKING IGNORANCE AND YOUR FUCKING KNOW IT ALL-NESS THAT MAKES YOU THINK YOU HAVE ANY FUCKING PLACE IN OUR LIFE TO GIVE ANY SOLIDITY TO THE FEARS THAT ALREADY GO THROUGH OUR HEADS EVERY FUCKING DAY! HOW FUCKING INCONSIDERATE AND STUPID ARE YOU?

One would think that the resolution to this is to stop telling people, but since I have to arrange for care for our son, it does require telling some people. Also, people know that Husband isn't working and why and so every time we see them, they ask how he is doing and what happens next.

And so, we are left with trying to focus on the ONLY two positive responses, which, by the way, are the only ones we WANT to care about:

a) I hope things go smoothly and this chapter of your life seamlessly and positively comes to an end (my dad)
b) On a scale of 1 to 10, this is a 4 on complexity of surgery. I can guarantee you will feel much better, at least 85% and, with your age, I think you will heal quickly and be able to return to work. You will be able to play football with your son and you will be able to do yard work and you could return to your previous position, but it would be non-sensible to do so. I have a lot of faith in this surgery. If it was going to cripple you or make things worse, I would tell you to wait 20 years for it. (his back surgeon, who, by the way, is one of the best in Michigan, if not the U.S. - He has authored numerous scientific articles and textbook chapters on surgery of the spine and has lectured extensively about spine trauma and reconstructive spinal surgery. In addition, he pursues research interests on spinal surgery and is a leading researcher on bone morphogenetic proteins (BMP’s) and cervical disc replacements. He instructs medical students, orthopaedic residents and spine fellows at Beaumont Hospital, is the Editor In Chief of the Journal of American Academy of Orthopaedics AND leads clinical trials nationwide for FDA approval of processes for speeding the healing time and pain management of Spinal Surgeries.... so yeah, we trust him)

For the rest of you, just because you know someone that it happened to, doesn't make it interesting to us. It is not your job to "inform us of the risks" - we pay a very expensive doctor to do that for us, and if you were qualified to give such information, you wouldn't have so much time on your hands. So shut the fuck up and go torture someone else with all of your "knowledge" about medicine. I nominate you to take some courses on personality and empathy. Or better yet, I'll wait until you're scared shitless about something and return the favor by reinforcing your fears.

I can't wait!!

Oh, Come On!

What is wrong with me? I have a work file I need to finish and I've decided that I need to finish it tonight so that my weekend is free of at least one job. But as I sit here at my computer, I don't have the energy. So, I print off my banking transactions in an effort to send out payments for bills (which, by the way, I didn't do the entire month of April, so, yeah, it needs to be done pretty badly). As I look at the three pages of transactions I need to update my checkbook with, I put that to the side too. Then, I'm thinking about how I should go hang out with the baby because he's going to bed soon, but I convince myself that I need to stay in the office and get EITHER work file completed OR bills paid. What resolution have I come to? In the last 40 minutes, I've tweeted, checked MySpace and my Gmail accounts numerous times. Really. Like, logged all the way in and all the way out MULTIPLE times.

Might as well post it. That took two minutes.

Sigh. Off to the living room. Wee One is having a meltdown and Husband keeps yelling NO. Probably involves the lamp cord or the kitchen chair blocking his path to the cat food bowls he wants to eat out of. Adventurous one he is. Sigh.