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.
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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.