The Whole Story: Part Twelve - Long Haul ICU


    At the end of my last post I mentioned that most people only stay in the ICU for less than 48 hours. Despite some rather exceptional circumstances with trying to get me to wake up from anesthesia, my first ICU stay would have only been about this long had it not been for overcrowding. That meant the hospital was too full to move me to a regular room and so they had to keep me on the ICU floor and downgrade me to acute care. My second ICU stay turned out to be the exception that made the rule. The output from my EVD showed that a shunt would be necessary, but because of the infection, they were unable to go in for an additional surgery right away. In fact, after my surgery, the infectious disease (ID) department became the ones in charge. This was because once the CSF leak had been patched the infection was now the most immediate danger. Neurosurgery was not allowed to lift a finger without their approval. 

    Looking back it's easier to piece this story together with hindsight, but in the moment very little of it made sense. We would get bits and pieces but not understand what they had to do with the whole picture. I think we were in the ICU for a few days before I even began to wonder why we had been there so long. And then the answer was of course you have to be in the ICU you have an EVD. But they weren't going to keep me there like that forever, were they? After a few days, we started to get news about cultures coming back. Unsurprisingly, they found Staphylococcus, commonly known as Staph, first. This is a common infection that's found on everyone's skin but shouldn't be found in anyone's brain. They adjusted the antibiotics I was on to be sure and target the specific strain of Staph that had been found. But several cultures were still out, so we just had to wait. 

    Five days into my stay the staff took pity on me. It turned out that the nurse who had been with me the first night of my ICU stay had put me on the short list to have my own room and when one opened up, I was transferred. I can't tell you what an amazing blessing that was! It felt like a palace! We had a window that looked out onto the football stadium. There was so much room to walk around we didn't have to worry about squishing and squeezing. We had a big cupboard that we could store all of our things in which came in very handy as I kept having the kids bring me more and more things from home. Specifically, I went through loaf after loaf of gluten free bread as I would use that to help fight the nausea and give me something to put in my stomach when I needed to take medicine. The hospital's options were typically pudding, applesauce, or occasionally some form of yogurt. The applesauce just didn't have enough to balance out the meds, and the pudding was so sickly sweet. When I could get the yogurt that would help, but it wasn't always available and if it was the non-fat version that just didn't do it.

    Shortly after transferring to my new room, we encountered a new hiccup, my EVD stopped producing fluid. The doctor had been having us trial weaning the EVD to see how I responded, and my headaches had been terrible. Every hour, the nurse would come in and measure the output, then dump it into a collection bag. Then suddenly, it just stopped. No one could figure out why. The neuro team tried every trick in the book, even laying the bag all the way down on the floor to get the gravity drain to kick in, but nothing worked. The first day it happened, my surgeon sent me down for a CT scan to see if any serious hydrocephalus was being caused. The scans looked fine, so he was unconcerned. He did, however, sign me up for another CT scan at 4:00 AM the next morning. Evidently this is very convenient for them because it allows the resident teams who round at 6:00 AM to have the results. What it doesn't allow is any sort of actual night sleep. That's OK, cause you're not gonna get any kind of night's sleep in the ICU anyways I guess. So I went down at 4:00 AM for another scan that came back looking fine as well. That day the drain continued to be dry until late that evening when my nurse came in to check my vitals. She went over to check the EVD output like she was supposed to and lo and behold there was something there! There was no precipitating reason for it to stop and no reason for it to start but start it did and it continued all the way until my surgery.


    Based on the output of my EVD, my surgeon determined that it would be best for me to have a VP shunt put in to avoid hydrocephalus. A ventriculoperitoneal shunt (VP shunt) takes excess fluid from the ventricles in your brain and sends it down into the peritoneal cavity of your abdomen. This large area has tissues that are specially adapted for absorbing excess fluids which makes it an excellent place to dump them. My surgeon drew the picture above for us in my hospital room to explain the procedure, and we found the diagram below online to further illustrate it. The shunt itself is a small device that sits between my skull and my scalp. It leaves a small bump that usually only I notice. I have to remember to mention it to my hairstylist though so it doesn't catch her off guard!


    Once enough of the cultures had come back, infectious disease decided that I could have surgery on the 22nd, 10 days after I had begun IV antibiotics. Apart from my little EVD dry spell, there weren't any surprises leading up to this surgery. My biggest concern going into it was dealing with the nausea, which I had been combating with bread, but I couldn't do that in preparation for surgery. I survived though and the surgery went off without a hitch. They did a great job with the anesthesia and I woke up very well. I had quite a bit of nausea, but how much of that was from the surgery and how much of that was from the antibiotics I couldn't tell you. Again, though, the hospital was full so we were stuck in our ICU room, just downgraded to acute care. What this means, apart from costing $3000 a night instead of $12,000, is that they only have to check your vitals every four hours instead of every hour, so you get to sleep. Unfortunately, there's still no bathroom in the room. 

    The next day all was looking well and so we began to take the steps necessary for us to get to go home. This wasn't as simple as my first discharge, because I was on IV antibiotics. They had to arrange with a company to ship all the supplies to the hospital for us to bring home with us as well as teach us how to use them. They also set up an appointment for a nurse to come to our home and do a dressing change and draw labs. On the second day after my surgery a nurse came in to teach us how to manage the IV antibiotics. It wasn't going to be as simple as the IVs in the hospital. They gave me a large backpack and we had to put a full bag of fluid in it every day. There was a pump that would run 24/7 administering the medicine. I had to carry the backpack with me everywhere I went, it was constantly attached. But what it did mean, was that I got to go home!

    We ended up staying in the ICU for 14 days, more than seven times the average length of stay. I was fairly disturbed by my lack of memory from my first hospital stay and so when we checked in this time, I purposed to remember the name of every nurse that worked with us during our stay, little did I know how long this list would get! Multiple times a day I would rehearse the list for myself to try to keep it fresh so I wouldn't forget. Several days in, I began to worry that I might lose one here or there and so I started keeping the list on our Facebook update group as a backup, but I still kept rehearsing it in my mind and was happy to recite it for any nurse who would sit still long enough to hear it. By the end of this stay, that list had 35 names on it. A few of the names were repeated, a few times there were multiple names in the same shift, but at the end of my hospital stay I could tell you all 35 of the names who had touched our lives in such powerful ways during our time there.

Here's the thing: Oftentimes in life we don't know what's coming next. All we can do is deal with what's in front of us right now. We might think we know what's coming, but even then, it's just a guess. When we were in the hospital, we had no clue. It truly slowed us down and reminded us of the importance of living in the moment. Tomorrow is never promised. Live Today!

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