narrative account of Will's health problems
Will came home with
20 hours of daily nursing care. He was on the ventilator during the
night, but off during part of the day (during these times, he required
supplemental oxygen and a mist system). This was a golden time for
us. Lori worked 2 days per week and Tom worked 4 days per week.
We generally tried to do most of Will's cares, because it was so wonderful
to finally have him home. We went out with Will as often as possible.
He especially enjoyed the zoo and the park (although he was very uncomfortable
around grass and dirt). However, Will's unrepaired heart problems
continued to compromise his sturdiness (he typically required three naps
each day). He also suffered chronic fevers of unknown origin.
Will continued to
experience ongoing vomiting after coming home. We had concerns about
his gastrostomy button, so he was readmitted to the PICU for 8 hours in
October to replace the button. Little did we know that this admission
was the start of another precipitous slide in Will's health.
weekend after this procedure, we planned to travel to Kentucky for the
wedding of two close friends (Tom was the best man). After long discussion
with the nurses, it was agreed that it was not realistic for Will
to make the trip and that the nurses and our friends would care for Will
in our absence. It was very difficult to go without him, but our
friends and family coaxed us into going (it was only the second time that
we had been away during Will's entire life). When we arrived in Kentucky
on Thursday evening, we found urgent messages informing us that Will had
been readmitted to the PICU. We eventually discovered that he had
been in severe respiratory distress. It was our understanding that
his lungs had filled with fluid due to a chylothorax (possibly related
to the previous weekend's procedure to replace his gastrostomy button).
Lori immediately caught a flight back home, while Tom drove back.
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