KatysBlog

As I wrote
yesterday, we are in Lucille Packard
Children’s Hospital (LPCH) in Palo Alto, California, where my 16-year-old
son is recovering from brain biopsy surgery. Paul is doing better today: he took a
wheelchair ride to one of the roof gardens, ate some lunch, and has taken
two walks up and down the hall outside his room. If he keeps up with this
good recovery progress, he can go home tomorrow.

Mostly we spend our day watching by Paul’s bed. From time to time, we
help him with his covers, call the nurse when some machine beeps in a
loud and agitated manner, or get Paul up to walk around again. The other family
in our room mostly speaks Spanish but we communicate well enough to share
the space. They brought in an amazing gelatin cake this morning for their
son – white gelatin with stained-glass-like insets of red, green, yellow,
and orange gelatin. Our family is celebrating my mother’s birthday this afternoon
(a little late due to Paul’s medical situation) so we will be able to share
our cake in return.

Our hospital room also shared a small religious service today.
Two women from the St. Andrew’s
Episcopal Church pastoral care team brought us the bread and wine reserve
consecrated at this morning’s
Eucharist service so that we could be part the celebration.

LPCH has a theme of sea creatures on its signage and fixtures. Chairs
are decorated with cut out starfish and turtles; octopi and rays glow from
lighted frosted glass panels set into the walls. Signs are in English, Spanish,
and Braille. I would rather that Paul not be sick but LPCH is a wonderful
place to get better.

Paul at Packard Hospital

Babar the Elephant, art at LPCH

Navajo Storyteller, art at LPCH

LPCH Octopus sign

LPCH Octopus wall window

LPCH roof garden

Photos Copyright 2009 by Katy Dickinson

My 16-year-old son has had severe headaches for several weeks with no known cause.
Last Monday, after trying other tests and a variety of increasingly strong pain killer
drugs, we went in for an
MRI (scan of
Paul’s brain). We did not expect to find anything but unfortunately an unidentified mass
showed up. Our family has been experiencing a wild medical adventure since
those results came back.

I am writing from Lucille Packard Children’s Hospital
in Palo Alto, California, where we have been since Thursday morning. World-class medical
excellence aside, Packard is a marvelous place for kids, sick or well. The walls are covered
with colorful and interesting art (both originals created to illustrate well-known children’s books and traditional works from many cultures), there are videos on demand, a computer game
room, small and large indoor and outdoor play areas. Our family used Packard hospital for the
first time just after Paul was born in 1998, after this hospital opened. Packard
hospital has continued to grow and (from the large areas now covered with white plastic
sheeting from which construction sounds) growth continues today.

The day before his surgery, we checked in to Packard and Paul’s grandparents visited. Paul
spent the evening (between medical tests) dragging his grandmother to the game room and
watching “Spiderman 3” and “Indiana Jones and the Kingdom of the Crystal Skull” on the
monitor over his bed. Since Friday morning’s surgery to collect a brain tissue sample,
Paul has mostly been asleep. He moved out of the ICU (Intensive Care Unit) onto a
regular double room this afternoon. We are waiting for more test results to come back (some
are not due until Monday, others in a week). So far, it does not seem to be a tumor or infection
but we still don’t know for sure what the problem is. The surgeon said that the headaches
and whatever-it-is in his brain may or may not be related.

Thank you to everyone!
This has been a stressful and frightening experience but we have been wonderfully
well supported by our family, friends, and community. Our friend Susan has run emergency
errands, and three different families have offered their homes near the hospital in case
we need a place to stay. The pastoral care team from
St. Andrew’s Episcopal Church is helping
us get our second car driven home. St. Andrew’s prayer shawl ministry presented Paul
with a beautiful and soft hand-knitted olive-rust-and-navy small blanket to keep him company
in his hospital bed. Our parish priests and St. Andrew’s Youth Group leader have all
visited and prayed with us. We feel very well cared for both in terms of medical support and
prayers and good wishes. We can almost feel the hands of God surrounding and protecting us.

Paul got out of bed, changed into his own pajamas, sat in a chair then ate three
grape popsicles for the first time just now. Praise God from whom all blessings flow!