A narrative account of Will's health problems

Summer 1998 to Winter 1999

Will returned for follow-up care at Children's Hospital of Boston in November, 1998.  The pediatric cardiologist noted greater concerns about Will's aorta and also noted the appearance of numerous collateral blood vessels on his left abdomen (suggestive of an impairment in circulation in his left leg).  Will is scheduled to return to Boston in March 1999 to undergo a cardiac MRI, catheterization, and, if indicated, his fifth cardiac surgery.


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Will also met with an audiologist and an otolaryngologist at Duke University Medical Center.  The audiologist confirmed that Will has a slight hearing loss.  The otolaryngologist once again confirmed Will's paralyzed vocal cord and ruled out the possibility of collagen treatment for the vocal chord.

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In January, 1999, Will underwent his second orthopedic surgery at Duke University Medical Center to remove the screws and bracket on his femur.  Happily, this surgery was much less traumatic and did not require another cast.  Will spent one night in the hospital and was hobbling by the next afternoon.  Within the week, he was climbing on furniture and jumping off--much to our chagrin (and relief).

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Due to the unresolved concerns about his history of clotting and circulatory impairment, Will underwent assessment in the Pediatric Hematology at Duke University Medical Center.  They ruled out any known clotting problems.

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In February, 1999, Will had dental work performed under anaesthesia at Duke University Medical Center.  This provided the promising news that he did not have any cavities and that his teeth had not been as seriously damaged as we feared.

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Will receives ongoing treatment at the speech and feeding clinic at Duke University Medical Center aimed at improving his eating.  He still gets the majority of his calories through his gastrostomy tube, but has become increasingly interested in sampling a diversity of foods by mouth.  It has been surprising for us to realize how much of our appetite is a learned response. Will was generally unable to eat by mouth during the first year of his life and as a result, food is not particularly motivating or reinforcing for him.

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Will was also seen by a pediatric ophthalmologist during this time.  He indicated that Will's vision was appropriate and that structurally his eyes appeared normal.  Concerns about visual problems had been repeatedly raised during Will's life because he received high levels of oxygen early in life.


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