Update #2
April 25th, 2017
Hello Again Friends and Family –
Just wanted to fill everyone in on Anna’s status since our
initial update one month ago. After being discharged from inpatient March 23rd,
Anna began outpatient dialysis at the DaVita Children’s Dialysis Center in
Chicago. The center is in Old Town and is the only pediatric center in the
entire state of Illinois. At least for now, this is the only option for Anna.
Although initially she began with three times a week, we are now experimenting
with coming in twice a week. She is on the dialysis machine for 4 hours so with
the early morning commute (she starts at 7 am) it is typically a 6 hour day.
She is usually exhausted by the time we finally get home. Anna’s situation was
initially a bit different from the majority of the kids at the center as
doctors considered her to be an “acute” dialysis patient. The hope remained that
her situation could still improve, some kidney function would return, and she would
not require dialysis indefinitely. So far her kidneys have not shown
improvement but, similar to one month ago, we remain on a day by day status in
terms of assessing her diseases and the ultimate goal of being eligible for a
transplant.
Anna has done her best to return to life with both a
positive attitude and outlook. She enjoyed spring break to the fullest going
out for dinners, to the Bulls game, for tea, shopping, etc. Unfortunately, a
negative reaction to medication as well as a nasty virus resulted in a return
visit to the hospital the week after spring break. Equally unfortunate, the
entire house (with the exception of lucky Uncle Dave) became ill as well.
On April 11th Anna was finally able to return to school on a
part time basis. She has also begun to work with tutors after school in the
initial steps to begin catching up after missing nearly 6 weeks.
When people ask “How’s Anna” it is not an easy answer as
literally every day has its challenges and ups and downs. Overall the dialysis
is “working” in the sense it is doing what her kidneys were not. But there
remain many side effects and complications, both from the medications she is on,
from the extreme change and restrictions in terms of diet and fluid intake, and
just from being in kidney failure. We continue to focus on the here and now –
enjoying the spring weather, returning to our “new normal” and life in the real
world, and keeping Anna healthy and happy. There is a lot going on in all of
our lives so it is quite the juggling act.
Thanks again to everyone for their support and love, for the
gifts and flowers, and for all the kind words and offers to help – it is truly
appreciated.
Many thanks and much love – Doug, Beth, Anna & Sloane
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