Zhou Lin had her first examination at Shriners this morning, and it
went beautifully, although it left us with more questions than answers.
We had an "interesting" time trying to get Zhou Lin's medical history
-- none of us knew how to translate such things as "diptheria
immunization" into Chinese, and of course Zhou Lin's family has no real medical
record for her, so no one could confirm or deny her having ever received
certain vaccinations, nor do we really know if she ever had childhood
diseases like chicken pox. The hospital decided to give her a full
battery of tests to get the information they needed, and left it at that.
Shriners had a case worker talk to Zhou Lin and her mom for a while
about what lies ahead, and although all the legal disclosures about
privacy and everything were obviously confusing to them, Zhou Lin and her
mom were convinced that everyone at the hospital is nice. I'm turning
out to be the official translator for everything, so I definitely need to
pick up a good Chinese dictionary so that I can learn words for things
like "informed consent" and "anal fistula." This will be a definite
learning experience for everyone.
The surgeon, Dr. Rob Sheridan, is a terrifically nice guy, and even
though Zhou Lin was naturally as nervous as any 14-year-old girl would be
about having a foreign man examining her legs and pelvic region,
everything was mercifully quick and professional, and the staff were able to
get a sense of the extent of her damage, which is indeed severe.
The staff consulted with Zhou Lin and her mom about what their
priorities are, and they seem to want to start with her feet and ankles, which
are currently extended like a ballerina "en pointe," making it
impossible to stand on her own for long. Dr. Sheridan thinks it may be
possible to reconstruct her ankles so that her feet can drop into a natural
position for walking, but he won't know for sure without consulting with
some top orthopedists here in Boston. He ordered a very comprehensive
battery of photos and x-rays, which took hours this afternoon. They
will be sent out by email for doctors in the local orthopedic community
to consult about over the weekend, and then we are to go in to see a
famous doctor from Mass General Hospital on Monday before a surgical
schedule can be worked out. I think Dr. Sheridan is glad to have this chance
to show other doctors what happens to a child who receives basically no
physical therapy after a severe burn, and they are using the case for
research purposes, which Zhou Lin's mom feels good about.
Dr. Sheridan thinks it will be fairly straightforward to add some skin
to the backs of Zhou Lin's hands to give her finger stubs more range of
motion, and to add some skin to her anal region to make it easier for
her to go to the bathroom. (Right now, Zhou Lin only goes every few
days and takes at least an hour in the bathroom each time. She was on the
toilet for an hour and a half last night, for instance.) But that
procedure will be later in the summer, or perhaps even next year. Dr.
Sheridan wants to get to work on the ankles first, so that they can
hopefully see some results by the end of August.
The decision seems to be not to do any major reconstructive cosmetic
surgery on the skin of Zhou Lin's legs, but to focus mostly on restoring
independent function. Dr. Sheridan did mention prosthetics as a
possibility if Zhou Lin's ankles really don't have what they need to function
again, but given her situation living in rural China, everyone realizes
that those might be tough to maintain throughout her life.
Anyway, we have the next three days off and are to report to the
hospital again on Monday for further examinations. Zhou Lin and the gang
clearly enjoy hanging out here at the apartment, and we also hope to do
some sightseeing over the weekend once the rain passes. Zhou Lin has
brought a fair amount of homework from her school in China, I am working
with her for about an hour each day on her English, plus we make her do
exercises in the wheelchair to increase the strength of her arms and
hands. I also taught her and Xu Lan a fun "hand dance" last night, which
had us all up giggling until almost midnight. The song we chose is by
The Monkees, which seems fitting since Zhou Lin and I were both born
during the Chinese zodiac Year of the Monkey. We'll keep practicing, and
would be happy to perform our dance for anyone who gets up here to
Boston to visit us!
Some photos from our homework session last night and our appointment
today at the hospital are attached. You'll see in the photo with Dr.
Sheridan that Zhou Lin drew him a beautiful picture that says "Xiexie
Yisheng" ("Thank you, doctor"), with which he was really delighted.