narrative account of Will's health problems
6/30/94 - 8/29/95 - Part II
In January, we learned
of an alternative cardiac procedure that was not a complete repair, but
offered a better likelihood of survival. We agreed to the alternative
course of action and Will was scheduled for heart surgery in February,
The alternative procedure
(referred to as a Damus-Kaye-Stancel procedure) required the placement
of donor tissue. Prior to his surgery, we were under the impression
that numerous grafts were readily available for the procedure. We
informed our family and friends about the surgery and many of them made
arrangements to travel across the country to come for the surgery and for
a blessing service to be held in the PICU (since Will could not leave the
unit). Approximately 36 hours before the surgery, we learned that
the surgery was canceled because a donor graft was not available and that
it could be several weeks before the surgery was rescheduled. We
obviously failed to comprehend that such a delay was even a possibility
or that there were any difficulties locating a graft (we were under the
impression that they were readily available). As a result, we faced
the situation of having many family and friends in transit to our city
(who would not be able to come back in several weeks). Furthermore,
we had put all of our work (including Tom's patients) on hold for several
weeks. Most importantly, we had mentally prepared ourselves that
Will was having surgery that he realistically would not survive.
Happily, the situation was resolved and a tissue graft was found after
we made an inquiry. Ironically, the graft was not even used during
Will did not undergo
the Damus-Kaye-Stancel procedure, but instead underwent another palliative
PAB surgery and an attempted repair of his aorta. Will survived the
surgery and his condition improved during the spring. However, immediately
after the surgery, his left leg was paralyzed. Will underwent a painful
EMG procedure that revealed that there was nerve damage in the area where
he had several catheter procedures. We have never clearly understood
the nature of such damage. Eventually, he regained functioning of
the leg, but his left femur and hip were deformed following chronic immobilization.
Will also subsequently experienced an obstructed ureter and kidney damage
that was associated with excessive bleeding in the area of his groin and
Will always had a
feeding tube that went into his mouth or nose down into his stomach, because
he had been unable to eat orally. However, he experienced numerous
problems with these tubes (along with frequent vomiting). Therefore,
he underwent surgery to place a percutaneous gastrostomy tube in spring
1995. This was a tube that was inserted directly into his stomach
through his upper abdomen (six months later, an unexpected consequence
of the gastrostomy tube would lead to major changes in Will's life).
During this hospitalization,
we learned that Will suffered from craniosynostosis (premature fusing of
the plates in his skull). It was our understanding that this can
be a consequence of both prolonged bed rest with the head in the same position
and secondary effects of an untreated heart defect such as Will's.
Will was placed in a series of tight-fitting and uncomfortable headgear
that were designed to remold his skull. This was discontinued due
to the discomfort that the headgear produced.
Will also suffered
numerous side effects from his constant medication regime (including antibiotics,
narcotics, analgesics, anticoagulants, diuretics, and anticonvulsants).
The antibiotics killed the natural bacteria in his body and resulted in
constant diarrhea that left open sores in his diaper area and chronic thrush
in Will's mouth (that required treatment with antifungal creams in his
mouth). Will's trachea site was colonized with the bacteria Pseudomonas
aeruginosa that resulted in constant discomfort.
Will was transferred out of the PICU into the pediatric intermediate care
unit. During this time, we began to plan for his eventual discharge
with a trachea tube and on the ventilator. We learned how to operate,
take apart, and repair all of the equipment that Will required to survive.
During the summer, we began to wean him off of the ventilator for several
hours each day. This meant that for the first time in a year, we
could leave the unit. We immediately began to take him on walks around
the hospital several times each day. We went to the cafeteria, to
see the aquariums, to visit our coworkers in the Department of Psychiatry,
and (for the first time since he was an infant) we were able to take him
outside. During the summer, we began taking him out on passes.
We took him home for the first time in over a year, as well as to the zoo
and the farmer's market. This was truly a miracle for us.
On May 12, 1995, Will celebrated
his first birthday in the hospital playroom complete with a 101 Dalmatians
cake. The playroom staff always went out of their way for Will.
They made sure that he had banners for all of his monthly birthdays and
that any athletes or celebrities who visited the hospital came to see Will.
Two years later, Will was invited to be the ribbon cutter at the dedication
of the remodeled playroom.
Throughout the summer, we continued
our training and preparations for discharge. As Will's world expanded,
his cognitive abilities and social interactions rapidly improved.
He began to use sign language (he could not talk because of his trachea
tube) and to take a greater interest in the world.
We cannot discuss Will's hospitalizations
without mentioning the many wonderful and courageous families that we met
and continue to meet in the hospital. We are continually struck by
the ability of these families to celebrate every victory. Sometimes
these victories involved something as small as a baby gaining a few ounces
of weight or sleeping through the night without pain. Once you have
spent some time in the hospital you realize that no victory is small and
that every one is celebrated--albeit with the recognition that there is
more hard work ahead. We also never lost sight of the fact that there
were many families who went home without their children. Some of
the stuffed animals in Will's collection were treasured possessions given
by families who had just lost a child. At first this practice terrified
us. But later we saw it as a way for them honor their child and give
us a gift of hope--a symbol to help us keep fighting. We still see
those animals in Will's collection and recall those families and their
beautiful children. We hope that time has brought them some peace
and that they know how much we cherished their kindness that was offered
during a time of terrible loss.
At the end of August 1995 (amidst
much fanfare and celebration), Will came to live in our house and once
again made it a home.
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