Many of us have sat in a hospital waiting area for a family member or a friend. Maybe it’s for a joyus occasion like the arrival of a new baby. Maybe it’s for an elected procedure, necessary or not, you still choose to wait. Maybe it’s under the context of an emergency. I’ve done all but the last. I was waiting for the emergency operation, but I was the one being operated on. I often think about this day, those that led up to it and those many that followed. I would certainly say my family & friends had more angst about my craniotomy than I did. I have a picture taken right before surgery and I look dazed. Maybe it was due to the medications that were pumped through my body to best prepare me for the major surgery I was facing, maybe it spoke to just how sick I was. I honestly don’t remember that day at all. I remember in great detail the day before until I had my first Grand Mal Seizure and then it all goes blank until I was coming to after surgery. I have snapshot moments over the next day or two after surgery but some major gaps. Overall they aren’t easy to deal with. I don’t ruminate on them long because I remember the tough emotions I was experiencing. Because of all the medications I was on following surgery, I am not sure how accurate my memories are though. At times these drugged altered memories have proven to be both frustrating and funny. I so desperately wish that I had pictures to document those first days. I hear I was a mess. I was very colorful with large bruises up and down my arms, one side of my face was turned down as if I’d had a stroke, my face was swollen, I drooled because I could not swallow and I had many pieces of medical equipment attached to me to keep me alive. I’m sure my hair was matted and filled with dried blood flakes too. Thankfully they didn’t have to shave my head, although Darren tells me that I tried to give permission for it. He was smarter than me, as in many cases, and informed me that my hair would remain intact. I was so glad of this later on when I was finally able to look in a mirror and glance into a face I certainly didn’t recognize. Pictures from that time in ICU are hard to look at, yes, its incredibly sad, but I don’t look like me. My eyes are distant, glazed & wonky. I felt like a Monster. Thankfully, I had some incredible Nurses during my hospitalization and one night one nurse Joe decided I needed some freshening up. He had washed my hair days before and had given me a unique hairstyle, Princess Leia buns, but he decided I needed another grooming session. On that special makeover night, Shari, Mom #2, was staying the night with me and she had a big hand in this pampering session with Joe. Because I wasn’t very ambulatory yet they made a makeshift ICU hair washing station. How I envisioned my bed & myself is probably far from what it actually happened. My hospital bed was raised high into the air and the end that my head was at was tipped down toward a trash can that had been lined with trash bags to catch the water that was being used to wash my hair. It was incredible to finally have my hair cleaned, brushed and put into Joe’s now famous Princess Leia buns. I felt like a new women! What a treat that truly helped to restore part of me that had been so broken. During my hospitalization and in the months after there were many times that I felt more like a monster than a person. This act of service made me feel special & valued. I will never forget all the compliments on my hairdo. It actually became my hairdo of choice while hospitalized because it allowed my hair to be up and away from the staples in the back of my head. It was especially helpful when I moved into Rehab three weeks after I entered the hospital for my brain surgery. Each step of recovery seemed to take forever. My physical therapist LeeAnne had explained to me many times that my recovery would ebb and flow. I would take two steps forward and one step back. In my ICU room, my husband Darren, drew a progression picture on my dry eraser board. He had a little car that moved toward a goal line. As I accomplished new tasks or skills the car would move forward, sometimes it stayed stationary as some skills or tasks seemed to take forever. The first skill I remember working on was relearning my center of gravity. When I finally regained the ability to move myself in bed, when the nurses no longer had to come adjust me in bed, I would try to sit up and my therapist would tell me that I was leaning far to the right and that I needed to correct myself to center. A mirror was put in front of me and my family was instructed to cue me to correct my posture when it was off. Over the six weeks I was hospitalized, she explained to me many times that my brain was lying to me and it was my job to correct it. As I understand it, your brain has the ability to regenerate neural pathways that have been broken or injured. After I relearned my center of gravity it was time to get moving. Lying in the hospital bed had been devastating to my muscle tone. When I entered the hospital before surgery I still some pregnancy weight on but I began to melt away, losing over thirty pounds in just over a week and a half. I had become just a shell of myself. Due to my lack of muscle tone, spread abdominal muscles from just being pregnant, and a giant lack of muscle coordination I had to start slowly. LeeAnne’s first goal was to get me to sit in a chair. She was armed with a gait belt and a lift team to get me transferred the few steps from my bed into a recliner chair in my room. I stayed there for over four hours. It was hard work for sure, but it was the start of something big. I remember LeeAnne also had me working on getting comfortable sitting on the edge of my hospital bed. This sounds like a simple move, but for me, it wasn’t. My brain was fuzzy and dizzy and I’d often feel like I would tumble from the bed onto the cold floor below. After numerous trials, I told her that I was comfortable with this and she decided that it was time to get me up and working on standing & my first steps. The hard work was only beginning. I remember having an entourage every time I headed out to walk. LeeAnne would be in front of me, ready to catch me at any moment. Someone would also follow me with a wheelchair, my oxygen, and my IV pole. The first time I only managed to walk a few inches. The second time I pushed even further and went 20 feet. Then it was 70 feet. LeeAnne told me that soon I’d be walking around the nurses stations in ICU. I think I audibly laughed as the idea of that seemed impossible to me. Another day passed and I did it. To challenge me further, she tied weights to my ankles. I felt like I had cement boots on. Even before I started down the path to relearning to walk, I was almost derailed completely from pain. Every part of recovery was slow and it seemed to take forever, especially swallowing. About a week and a half into my stay in the ICU, in an extreme state of sleep deprivation, I had actually managed to fall asleep and had an incredibly realistic feeling dream. I dreamt that I had two nasogastric tubes, one in either side of my nose. During my dream I came to the conclusion the extra tube needed to be removed so I started to do that. Unfortunately, I woke up in a groggy state doing just that, I was pulling out my only nasogastric tube. I began to become upset which woke up my sister Jaime who was sleeping in the recliner chair next to my bed. This tube had been responsible for delivering all my food & most of my medications to me in the days following surgery. By the time I had pulled the tube mostly out, I finally was awake enough to realize what I’d just done. I was devastated and immediately overwhelmed. I remember having the nasogastric tube placed and the thought of enduring it again was terrifying. I remember how the Nurses had tried a few times to place it in ICU, but were unable and so I was sent to Radiology for them to place it. In my drugged & sleep deprived stupor, I thought that the Radiologist had sat on my chest and forced the tube down my nose & throat into my stomach. It was so painful and scary. I told my sister Jaime that the procedure was worse than childbirth. Little did I know what was to come. Because I had removed the nasogastric tube and I still was unable to swallow discussions began about a more permanent solution. A peg tube was suggested and my anxiety and fear became crippling. I was convinced that I was dying and this was the last resort to buy me a little more time. You see my only experience with a feeding tube were when my Grandma Lorraine was fighting Cancer when I was 15. She had to have a feeding tube and I remember she declined rapidly after that. I remember learning how to feed her and now it looked like that was becoming my reality. I was convinced that a feeding tube was the final nail in my coffin. The Doctors, Nurses and my family pled with me and guaranteed that I was getting better and this peg tube would help me as I continued to recover. After much conversation, I agreed to allow the peg tube to be placed. The next day, two Gastroenterologist Surgeons and their Nurses came into my ICU room to perform the procedure. I was given some medication to make me relax and go into a dozed state. I remember most of the procedure and how they advanced things down my throat and then popped up through my abdomen. I remember well the intense pain I had following the procedure when the feel good meds wore off. It was the most excruciating pain I’d every experienced. On a pain scale of 1-10, it was a 20. My Mom and Darren watched helplessly as I cried out in pain. The pain meds I was to receive would wear off 15 minutes before the next dose was set to be given. My Mom kept asking the Nurse what they could do for me. It had been explained to me that recovery from a peg tube wouldn’t be bad. However, I had three things against me, my age, my abs were still separated from just being pregnant, and I developed chronic hiccups that we couldn’t find a cause of, so my initial recovery was far from easy. Finally my nurse called my primary ICU doctor and he gave permission for a pain pump to accompany the fentanyl patch I had for pain. Finally, I had relief from the constant pain. Even recovery from my craniotomy wasn’t as bad as this. The day after the peg tube procedure LeeAnne walked into my room, ready to get back to work. Instead of a can do attitude she was met with a hot mess. I still hurt badly from surgery and it felt weird moving with this new foreign appendage. I was so worried I would fall or make some sort of movement and accidentally rip it out. The whole thought of that, the pain it would cause, and the fear of having to go through the procedure again was crippling. LeeAnne listened and tried to reassure me that it would be fine and that she wouldn’t let anything happen to me. I was just so scared. After many attempts trying to convince me to get up and moving and me trying desperately to talk her out of it, she pulled out ‘the talk.’ I’m not sure if she has to use this talk with each one of her patients or if this one was handcrafted just for me. She looked at me and said something to the effect of put on your big girl panties and lets go, or I’m gone. She wasn’t messing around. She was done with the little dance we were doing and I had to decide to get going or she was going to get going. I knew I needed her to help me get better and I was afraid she wouldn’t come back and help me, so I figuratively pulled on my big girl panties (I was still modeling the latest hospital gown style) and got going. I didn’t slow down either. For the rest of my time in the hospital (about more 4 weeks), I pushed myself. Even when I was tired, which was all the time (I got maybe 4 hours of sleep at night), was dealing with Pneumonia (I developed in the hospital), even after heartbreak when my initial release date came and went, I worked hard. It didn’t come easy or fast, it took patience, hard work, determination and lots of prayers. Thank you again & again for those of you who were praying for me & cheering me on, what a difference it made!
