Back in 1998, my dad had a brain aneurysm (his second, the first was a ruptured brain aneurysm when he was a teenager that he survived without any impairment othe than an aneurysm clip on his left carotid arterty) that required a coil embolization (a new technique at the time, he was the 7th patient they had done at this hospital). After placing the coils, a clot broke free resulting in a stroke. He was recovering well and was almost fully functional, when two weeks later when he developed hydrocephalus, so they placed a ventriculostomy to relieve the pressure. Two days after that while doing a CT to check the placement of the catheter, they found an infection in his brain stem (later to also note that he had developed a left ear infection), which required a craniotomy. That resulted in him being in a coma and on a ventilator.
The only directive he had ever given me was that he didn't want to live on a machine... That ventilator weighed heavily on me. The doctors told me that he had three days to come out of his coma or he probably never would. In an effort to try to get any type of response out of him, they would twist his nipples so hard that they bled. My sister's 14th birthday was on day 5 of the affair and I decided that there was a difference between living on a machine and recovering from a serious incident for a few days. If he didn't come out of the coma, I would pull him off the ventilator on day 7 - just in case he hung on, I didn't want him to die on my sister's birthday.
He woke up on day 3 and ended up on the ventilator for about a week. It was that incident that finalized his brain damage, Essentially, he was a 41 year old that lost the entire top half of the right side of his brain. He wasn't moving his left side at all, he wasn't able to talk well, his short term memory was totally gone, he couldn't even sit up without falling over and could barely swallow a pureed and thickened diet. After 2.5 months of trying to get him stable enough to leave, he went to rehab where he stayed for another 2.5 months.
After rehab, he came home to live with me... and he regained almost all of his mental faculties. He could walk with assistance, having regained most of the major muscle control in his left leg, but his primary long term deficits were the loss of his left arm and the neglect of the left side of his field of vision. The kicker? He remembers every word that was said to him while he was in a coma. The doctors can't believe that the person they see corresponds to the brain imaging that they're looking at... while they expect that amount of plasticity in a younger individual, it's extremely rare in an adult. Needless to say, he was pretty happy with his life, though he faced the usual depression and whatnot that comes with such a significant change in his lifestyle.
Fast forward to this year... he had mastoiditis in the same ear as that infection back in 1998 and took two courses of antibiotics to get rid of it. Five months later, he went blind and started exhibiting stroke symptoms. I took him to the hospital and he was diagnosed with an abscess in his occiptal lobe (visual cortex) that penetrated the ventricles, causing ventriculits. To do imaging and a lumbar puncture, they ended up needing to sedate him and he ended up on a ventilator. Broad spectrum antibiotics (flagyl, vancomycin, and ceftriaxone) were started that night. A week in, he was, once again, no longer responding to pain.
Once again, I was stuck with confronting my father being on a ventilator and essentially in a coma. Once again, the doctors came through telling me that the odds of survival weren't very good and that, given the previous brain damage to the other side of his brain, now that both sides were involved and with little reserve brain left, he almost certainly wouldn't recover.... but there was still a chance that, if I stopped treatment, he could survive, though it wasn't likely. I decided that my dad would want the only option that gave him any chance of an outcome worse than death, so I convinced neurosurgery to try a ventriculostomy again... and two days later, he started following commands again and another three days later, he was taken off the ventilator, breathing on his own and talking, though there was some aphasia.
Seventeen days in, my dad left the ICU and went to a floor bed, where he continued his course of IV anitbiotics. He was improving on almost a day to day basis and a month later, he was probably 75% back to normal... he had even regained his vision. We started talking discharge and plans for follow up, but there was still the problem of the antibiotics and when to stop them. Infectious Disease recommended an 8 week course since nothing from the LP or ventriculostomy ever cultured but we could tell the anitbiotics were working.
With two days left to go, the vancomycin attacked his kidneys and he went into acute renal failure. He left the floor and went back to the ICU, where he spent a week on dialysis (three treatments). His kidneys recovered even to be able to maintain themselves without dialysis but his urea and sodium levels were all over the place... Once again, my dad was confused, lethargic and unable to follow commands. Every once in a while, everything would align and he would be somewhat normal.
Then one day, I came in and his face was droopy, the left half of his tongue was numb and rolling over on itself, plus he was gnawing on it (fortunately, he has no teeth). A positive blood test and imaging showed that, once again, the infection was back. Ten days into this course of antibiotics, we placed another ventricular catheter so that we could stop antibiotics and sample his spinal fluid (as well as to check for hydrocephalus since his ventricles appeared loculated) a week later. The CSF was negative for infection but in the meantime, I started to see signs of mental improvement. Ten days later, my dad was medically cleared to leave the hospital and go to rehab... well, then the next day, his sodium level spiked again.
That was a weke ago now. The last two days, he's been fully awake and alert and communicating pretty well. There's still some aphasia and the nurses neglected his oral care, so he had a buildup of yeast, mucous and blood in his mouth. He's moving everything that I expect him to move and he's able to see and make out objects, though I don't know if it's good enough to read yet. I tell the family that he's not out of the woods yet but we can touch the grass.
Now, my dad is a remarkable case... definitely one for doctors to study. Chances are that it was the massive stroke 14 years ago that allowed him to survive the ventriculitis by allowing the ventricles room to expand rather than to crush the brain from the inside out. I'm sure he's going to have some residual effects from the latest trauma going forward, but he's happy to be alive right now.
Fully accepting that my dad always seems to be an exception to the odds, I think it's important to keep in mind that we don't always know as much as we'd like to think we do. My dad's been read his last rites (I'm an atheist, but it's not my job to denounce his beliefs on his death bed for my "benefit") three times and we've been told that he has either little or no chance of survival probably a dozen times by different doctors through the three brain incidents in his life. It's amazing what we can manage to survive, even thriving after everyone but you has already decided its time to give up.
Most people aren't going to be like my dad... but having been the one, as his health care proxy and power of attorney, that has to make the decisions for him, please, please tell your next of kin what you want, even if it is just some general guidelines. Assign someone to be your proxy that you can trust to make the decisions you would want to make yourself. It's very easy as a proxy to exercise your desirss instead of the desires of the person you're actually making the decisions for. Nobody wants to talk about death... even after the second aneurysm and stroke, my dad still refused to give me any guidance about what to do in the event of another hospitalization or even what he would want for a funeral (which will happen some day). I know it's an uncomfortable subject, but it's a lot harder for your loved one to make the decisions you would want, if you refuse to talk to them about it.