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.