At least she has her mind

Shaina has always been the smartest of the three of us. Don’t get me wrong, David and I are bright, but Shaina has always had a very sharp mind. Anything she reads or sees on TV, she remembers. She is an encyclopedia of cooking and cultural factoids. She has always been an amazing writer. With anything she writes – cards, stories, but especially her poetry - it is obvious that she has the gift of the pen. Despite everything that her body has put her through physically, she always said, “at least I have my mind.”

There was only one time through all of this that Shaina really lost her mind. It was after her last transplant, and her Prograf level got way too high in the hospital. The Prograf toxicity brought on extreme psychosis. She spent 3 days in the ICU; she couldn’t talk, she couldn’t eat, she was tied to a bed and she was blank in the eyes. Shaina wasn’t there. She was like a helpless infant. The doctors warned us that there may be permanent damage, but thankfully, she snapped out of it on the night of her birthday. And just like that, Shaina was back, dirty mouth and all.

I thought about those couple of days when my mom called me earlier this month. I had just returned to New York after a visit to Dallas for Dad’s birthday. We had taken a car trip to see some fossilized dinosaur tracks in a riverbed, except we didn’t see any tracks, we just saw a river… long story… just imagine Chevy Chase in the National Lampoon Vacation movies, and you’ll get the gist. Anyway, everyone piled into Dad’s rented SUV excited for a family outing that didn’t involve doctors. Shaina seemed to have a really great time; we even brought Sato along. The next day before I was scheduled to fly home, Shaina was not able to swallow any food. She was having severe pain in her esophagus. Dad took me to the airport, Mom took Shaina to the hospital. They sedated and scoped her.

After the procedure, I called mom to see how everything went. She said Shaina was having a tough time waking up from all the drugs. The next day, Shaina still hadn’t “woken up” completely. She was in a fog. She couldn’t really talk, she only responded when you got right in her face and raised your voice, but even then she was confused and having a hard time opening her eyes. As the week went on, she got worse. She was incredibly thirsty and in and out of a coma-like state. Mom and Dad didn’t know what to do. She required 24-hour care. Mom was bringing her food three times a day, usually cream of rice, forcing her to take her pills, and helping her to the bathroom. When the doctors saw her, they said she was suffering from hepatic encephalopathy. One of your liver's jobs is to remove toxins, like ammonia, from your blood. Too much ammonia causes damage to the brain and nervous system. Shaina's doctors immediately put her on Lactulose and Rifaximin to help reduce the ammonia in her body.

Shaina seemed to get better for a couple of days, but the next week, it happened all over again. Dad called me around dinnertime on Friday and asked me if I would be willing to come back to Dallas to help with Shaina. My dad rarely calls me directly (I call their house at least once a day and talk to everyone), and he has never asked me to come home; he always offers to bring me down if I feel like a visit. This time, Dad asked me if I could fly down the next day to help, and I knew it was serious. I jumped a plane the next day and arrived to find Shaina totally out of it and Mom at her wits end. Shaina was back in a coma-like state. She had lost the one thing that was most important to her - her mind. To this day, she doesn't remember a whole week of her life.

The night I arrived, I told Mom to get some sleep and I would keep an eye on Shaina. Shaina was somewhat awake, but confused, and she was suffering from these violent involuntary jerks that made it difficult to sit up, let alone walk. (We later learned this was a severe case of asterixis, or “liver flap,” commonly associated with encephalopathy.)  I came upstairs to check on Shaina during dinner and saw her sitting on the floor near the door to her room. She had fallen down while trying to turn off her light. I was really worried, but she begged me not to tell Mom. So I didn’t. But I made her promise that she would call me when she wanted to get out of bed and I stayed in her room until she seemed to fall asleep.

Shaina's broken and bruised foot

Later that night, I was asleep across the hall from Shaina with both doors open so that she could call for me if she needed me throughout the night. I heard a large crash and Shaina cry. I ran into her room to find that she had suffered a jerk and fallen trying to walk to the bathroom. I checked her head and her body but didn’t see any blood. She was crying as I helped her back into bed, saying that she thought she had broken her foot. She said she had heard a snap when her toes curled under her foot and she stepped down on them. I looked at her foot, but didn’t see any bones protruding, so I thought she must have hit it hard on the door frame or somewhere during her fall and perhaps sprained her ankle. But when I went back to check on her an hour later, her foot was swelling up and there was an obvious hematoma spreading across the top from her ankles to her toes; her whole foot was turning red and blue and was terribly swollen. It was 2:45am. I asked her if she needed to go to the hospital right then, or if she could wait until the morning when we had an appointment with her doctor. She wasn’t able to respond clearly, but she seemed somewhat stable and I knew my mom could use a full night’s sleep. I decided to put ice on it and make her elevate her leg until my mom was up at 4am. I camped out on the floor in Shaina’s room until I heard Mom downstairs in the kitchen. By time she saw Shaina’s foot, it was even more bruised and swollen.  We got her dressed, wrapped her ankle in an Ace bandage, and made our way downtown.

As soon as Shaina’s liver doctor saw her, he said she needed to be admitted to the hospital. Though she was much more lucid that morning, he was concerned about her color, her recent confusion, and the fact that she fell in the middle of the night. Shaina was admitted for observation of hepatic encephalopathy. And a possible broken foot. When we were admitted, Shaina tried to sign and date her paperwork, like she always does. I sat beside her and watched my sister, one of the most eloquent writers I know, struggle to remember how to sign her own name. When I told her the date, she couldn’t remember how to write the number 2. It was hard to watch, heartbreaking actually. And it was even harder for her. She was totally frustrated, but lord knows she wouldn’t let me help. I took it as a good sign that she at least still had her strong will. It’s that determination that has gotten her this far, after all.

Shaina gets a cast

The first x-ray of her foot did not show any fractures. They wrapped her foot in a soft splint and told her not to put any weight on it, but it was killing her. A day or two later, however, they did a CT scan, and found a Lisfranc fracture in the bones on top of her foot. This was a break that was usually fixed with surgery, according to the orthopedic surgeon, but he did not want to perform surgery on Shaina because she was a high risk for infection and because he didn’t want to expose her to unnecessary sedation that could worsen her encephalopathy. Instead, they fitted Shaina for a cast that would have to stay on for 6 – 8 weeks. She is not allowed to walk or put any pressure on her foot.

While in the hospital, they also discovered that her Prograf level was way too high, which could be contributing to her encephalopathy. And she has several infections, which they are now treating with antibiotics. All of this in addition to getting her blood sugar under control (more on that in the next post) and lowering her pain medicines seem to have improved her mental state. She has had brief bouts of fogginess, but for the time being, she appears to have her mind back.