A narrative account of Will's health problems

Winter and Spring 1996

While it was miraculous to us that Will was home (given the past 18 months), he was still far from being a healthy little boy.  He had just undergone a catheterization, heart surgery, and two urological procedures in the past month.  He had undergone more than one dozen major procedures or surgeries during the course of his short life.  He was completely orally defensive and did not take any food by mouth.  Will also suffered from numerous medical and developmental problems related to his prolonged hospitalizations and numerous procedures.  He experienced constant vomiting that, combined with his paralyzed vocal cord, lead to numerous aspiration pneumonias.  This produced a vicious cycle in which Will would vomit, producing respiratory distress that would result in coughing and would elicit more vomiting.  He also was at increased risk for kidney infection because of his ureter problem.  He was hospitalized twice due to aspiration pneumonias in March and April, 1995.  He was also hospitalized due to a kidney infection in April and due to RSV (a serious respiratory virus) May, 1995.  These hospitalizations ranged from 1-10 days in duration.


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It continued to be difficult to place IV's due to the number of IV's that Will had during his prolonged hospitalizations.  During his hospitalization for RSV, the only site in which the physicians were able to start an IV was his jugular vein.

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On an oddly humorous note, we realized that Will had a tiny hole the size of a pin in his throat where his trach had been (known as a fistula).  The fistula had occurred because scar tissue had prevented the trach site from completely closing.  While the fistula was not visible, we discovered it because we would occasionally hear air "whistling" from Will's neck or see a small bubble emerge from his former trach site.  At first we assumed that we had gone crazy (following William of Occam, this seemed like the most parsimonious explanation).  After we realized that there truly was a hole, we panicked believing that this would have disastrous implications necessitating further hospitalization.  It sounds strange now, but it seemed perfectly logical to us at the time.  After Will's pulmonologist stopped laughing uncontrollably at us, she informed us that the fistula was not uncommon and that it would likely close over time (although naturally Will's did not!).


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As a result of the vomiting, Will was frequently placed on steroid medications.  These frequently helped dampen his vomiting, but also provided significant risks to his developing body.  The aspiration pneumonias necessitated the use of powerful antibiotics that caused significant gastrointestinal distress and incessant diarrhea--that resulted in painful sores in his diaper area.  Will's gastrointestinal doctor adamantly recommended that Will undergo a procedure known as a Nissin-fundalplication.  This surgery involves making a flap out of part of the stomach to cover the opening to the esophagus.  This allows food to enter the stomach, but prevents reflux of food from the stomach up the esophagus.  We resisted having this surgery because it often times results in painful distension of the stomach and because we believed that less invasive methods could be found to treat his vomiting.


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When we returned from Boston, Will had spent almost his entire life in bed (usually hospital beds).  He could sit up, but could not stand, crawl, eat, talk, etc.  By July, 1996, he had learned to crawl, stand, and walk.  He made some progress in eating and had learned to vocalize.  It was amazing to us that he was able to make up two years of development in the six months following his heart repair in Boston.  Try as we might, we could not help wondering what Will would have mastered if his heart had been repaired in a timely fashion.  We focused the majority of our thoughts on how lucky we were that he was alive.  Will truly was developing into a playful, curious, and loving little boy.  His presence made our home a place of great joy.


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In February 1996, Will made went on his first (non-medical) trip to see his aunt and uncle in St. Louis.  This trip was followed by his first (non-medical) plane flight to visit his grandparents on the gulf coast.  Will's grandparents--like all of our family--were wonderful during Will's many tribulations.  In hindsight, it is apparent that the only thing that might be worse than seeing your child suffer as Will did would be to have it happen to your grandchild.  We recognize that they constantly agonized over Will's suffering as well as our suffering.  One of our greatest joys was seeing the look on their faces when they first saw Will without any tubes, wires, or medical equipment.


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