A narrative account of Will's health problems

Home:  8/29/95 - 10/15/95

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.


---


The 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.


---