Salty Zebra

    One part of this journey that became a particular challenge for me was my hair. A significant part of me wondered if my hair, which was so slow to dry and I tended to wear in a ponytail which covered my incision totally, was partly to blame for my infection. After the first brain surgery, I had a thin line of hair shaved where my incision was on the back of my head down to my neck. After the second surgery, this thin line was widened to a landing strip. In addition, I had a few spots on the top of my head near the front that had been either trimmed or shaved so that the EVD could be placed.      The day after my second surgery a sweet nurse helped Michael to “bathe” me with we wipes and wash my hair with a washcloth. I didn’t even know this was possible! She got a basin of water, and they soaked washcloths in it then ran them over my hair to wet it, they applied the soap, and then they repeated the process with the washcloths to rinse it. I felt very loved...

    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 thi...

It's 6:00 AM in the ICU. I haven't slept more than dozing in and out because the nurse is required to check my vitals and measure the output of my EVD every hour in addition to popping in and out to give meds. I can hear the voices from the hallway as the resident teams begin to make their rounds. My neuro team should be here shortly. I wonder who will be taking point today? Will they have anything new to say? 7:00 AM. My neuro team visited without any new information, but they were very sweet and encouraging. My husband helped me to order some breakfast on my phone. That seems to be the easiest way to do it with the least miscommunication. We've finally gotten it in my chart to have me on the gluten free menu! That makes things easier. It's time for the nursing shift change. This happens in the 7:00 hour AM and PM. My nurse from the last shift will bring in the new nurse, introduce them, teach them about how my EVD pole works, and then leave me in their care. 8:00 AM a...

My preop experience was much different this time than last time. Where the time before I was laying there waiting with doctors coming to see me every half hour or so, this time there was a line of doctors in the hall waiting their turn to come in because I guess I was late! I made sure to let anesthesia know about what a hard time I’d had waking up from the previous surgery and they assured me they’d adjust, and this time would be different. True to their word, I woke up in the surgical suite after the operation and stayed awake through post op and into my ICU room. As I came to, I realized that somehow, while I was not conscious, I managed to bite my tongue really hard. This did end up bothering me for a few days!  Music is my heart language, and it is how I experience and process my life. This season was no exception, and I had curated a Spotify playlist that helped me so much. When I woke up from anesthesia after the surgery, one of the songs from this playlist was on repeat in...

    When you have to work with medical insurance a lot, sometimes they end up giving you a liaison. I have one of these, her name is Karen. I had a phone call with Karen sometime shortly before or after my first brain surgery during which she shared with me some of her own personal experience. She also had an issue with her brain that required surgery. She related to me a story about her post op where the doctor asked her to touch her chin to her chest. She looked directly at him and asked, “Is this really a best practice?” Picturing this interaction definitely made me chuckle. I guess this is something you would expect an advocate to ask, even though this is a fairly standard test for meningitis. Returning to where I left off in my last post, Michael had just taken a look at my incision and said, “Uh-oh.” He had parted my hair and seen quarter-sized goopy white patch next to my incision. Knowing this wasn't a good thing, we immediately called neurosurgery and after a length...

     Recovering from brain surgery is serious business. While technically I could walk, when we were in the hospital I not only used a walker, but they also put something called a gait belt around my torso that my husband held on to just in case I tripped or lost my equilibrium. They sent us home with this, but we didn't really need to use the belt at home, I only used the walker. It was very strange needing to use a walker to get around the house. It wasn't as if I had injured my hip or my legs. It was simply that without it I might tip over. Everywhere I went, people were watching out and hovering over me. I know I was very blessed to be cared for, but I am an introvert, and that can be very overwhelming. Recovery also takes a lot out of you, more than you realize. I was always tired. I'm one of those people who cannot sleep sitting up. Not in a car, not on a plane. It just doesn't happen for me. But after brain surgery, if I was sitting on a couch visiting with som...

     Prior to my brain surgery, but after the sinus surgery, I was playing a puzzle game on my phone, when all the sudden all of the numbers doubled. 1s became 11, and 2s became 22. It only lasted for a few hours, and then settled into more of a blurriness than a double vision. I likened it to wearing 3D glasses when you were not watching a 3D movie. That was pretty scary for me. I'm an extremely visual person, and to have something so inherent to my experience of life shift so drastically, frightened me. It was the main reason why we ended up in the emergency department for 10 hours the next day.       So, when I woke up after surgery with double vision, it felt like the bottom dropped out of my world. Of course, I hoped at first, that it would just last a few hours like it had before. And then I hoped for a few days. And then I began to lose hope. It is as if the focal points of my eyes are misaligned. One image is upright and makes sense, but there ...

  Monday, April 24th, we headed up to the hospital bright and early. There were very few people scheduled for surgery that morning so they got us back right away. My PACU nurse had recently transferred from the ICU. He was used to running Central lines, and I got to be his Guinea pig/pin cushion to practice his IV skills. He did much better than the nurse in the emergency department a couple of weeks ago, so I didn't complain. I was dealing with some nausea, probably because I hadn't eaten breakfast, so they introduced me to something called a queasy. It's in aromatherapy pod that you clip to your gown to help with nausea. It has citrus, ginger, and fennel scents. It actually helped a lot and became something I asked for multiple times during my stay. It's nice to have something that helps without side effects. They took me back initially without my husband, which really stressed him out. In the past, they haven't separated us until I went in for surgery. I made sur...