A narrative account of Will's health problems

Second Hospitalization:  6/30/94 - 8/29/95 - Part I

Will spent the next 14 months in the hospital (from age 2 months to age 16 months).  From June 1994 to June 1995, he never left the hospital.  In fact during the majority of the time he never left the PICU, except for procedures.  Will grew from an infant to a toddler in a very strange and alien world--without grass, trees, or wind.


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During this 14-month hospitalization, we both worked in the hospital.  Therefore, we slept, ate, worked, and raised our child in the hospital.  Oftentimes, we went days without going to our home.  Lori probably slept one night per month at our home, while Tom spent approximately two nights per week at home.  We spent every waking minute with Will (lunchtime, weekends, mornings, evenings, etc.).  One of the losses of having a chronically ill child is that you miss out on many opportunities to parent your child.  Therefore, we learned how to do every one of his cares that we could.  This included trachea care and changes, suctioning, feeding, as well as bathing, dressing, and bedtime routines.  Lori also became very active in the hospital community.  She was asked to join the parent advisory committee, frequently assisted families in learning how to perform trachea care and tube feedings, and was the leading fund raise in the MDA Walk-a-thon.


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Will was readmitted, reintubated (orally) and placed back on the ventilator.  Chronic intubation produced considerable discomfort for Will and made it very difficult for us to hold him without nursing assistance.  Happily, the nurses were more than obliging when it came to helping us hold, love, and parent Will.  They loved Will as we believe that they love their own children and helped us through a long and difficult time.


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During this hospitalization, chronic central lines were placed, which developed blood clots.  Parts of these clots broke free and went to his brain, producing seizures and strokes.  As a result, Will underwent an EEG and a spinal tap, and was prescribed Phenobarbital (an anticonvulsant medication for the next six months).  Other clots recirculated through his body because of his heart defects and ultimately became lodged in his right hand.  The clots in his hand caused the ends of three fingers to die.  Initially, there was concern that he would lose his entire right hand.  During the course of several months in the fall of 1994, Will's fingertips died, blackened, and withered.  This was a horribly painful process for him and he received constant narcotics.  The surgeons informed us that letting his fingers auto-amputate would save more tissue than amputating them surgically.  This became especially harrowing for Will, our family, and the nurses, because you never knew whether this would be the day that one of his fingers would come off before your eyes.


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After the initial clot problem, it was discovered that other deep lines were clotted.  We tried several medications (unsuccessfully) to break up the clots.  Will had a severe allergic reaction to one of the medications (streptokinase) and developed a 106-degree fever.  Eventually, the decision was made to remove the lines, despite the fear that it would shower his body and brain with emboli.  This was one of many agonizing decisions that we had to make during his hospitalizations.  Mercifully, the lines were removed without any further (apparent) damage from the clots.


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The clotting problems raised concerns that Will might suffer from a specific clotting disorder such as Protein C or Protein S.  This was a specter that haunted us for the next three years and was not ruled out until 1999.


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During this 14 month hospitalization, Will had so many IV's and central lines that it became very difficult to find sites for new IV's.  It was very upsetting when one of his IV's would blow, because it could take an hour or more of sticking him with needles all over his body (hands, feet, arms, head) to place a new IV (which might blow out within the hour).


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Because Will was not making progress coming off of the ventilator, it was decided that he should have a tracheotomy tube surgically implanted, instead of being orally or nasally intubated.  This surgery took place in September, 1994.


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Following the tracheotomy surgery, it was our understanding that "Will [would] be home before there was snow on the ground."  Clearly, this estimation proved to be incorrect.


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Following the hand and clot problems, Will's health declined even more severely in November and December, 1994.  During this time, Will suffered uncontrollable fits when efforts were made to "wean" him to a different ventilator.  This resulted in Will receiving massive doses of narcotics and experiencing frequent episodes of hypoxia.


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In November, we discovered from a newspaper article that there was a blood recall because of the discovery that several donors had died of Creutzfeld-Jakob disease (a horrible, irreversible dementia related to mad cow disease).  We subsequently learned that Will had received blood products from a donor who died of CJD.  It is terrifying to us to think that our son could survive the hell he has been through, only to die of a horrible dementia.


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During late fall 1994, we were informed that CT scans revealed that Will had areas of brain tissue loss, probably associated with the embolic episodes and chronic hypoxia.  It was our understanding that Will had suffered brain damage--although it was not possible to know the full consequences of these insults at that time (or at the present time).


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One bright spot of fall 1994 was Will's first thanksgiving.  Lori and I could not imagine the idea of having thanksgiving without Will.  Therefore, we decided to bring thanksgiving to the PICU.  We brought a nesco roaster and a 20 pound turkey into the break room of the PICU and proceeded to cook our turkey.  There were only two patients in the PICU at the time, so both families, Will's grandparents, and all of the medical staff shared thanksgiving dinner with us.  Throughout the afternoon, you could smell the turkey roasting through much of the children's hospital (needless to say, we were careful to keep it away from oxygen!).

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In December, we were informed that Will required additional heart surgery within the next several months.  While stopgap surgeries had been employed up to this point, we understood that he required a reparative surgery at this time.  However, it was our understanding that Will would only have a 5% chance of surviving the surgery and, if he survived, that he would only have a 25% chance of not having marked brain damage from the surgery.  Our hope became to wane at this point.  We basically decided not to have any surgery (rather than subject our son to such horrible odds).  During this time, we placed a DNR order on Will.  Given the severity of the problems that he had suffered during the fall, we did not want excessive measures used in an attempt to save him that might simply result in more suffering.  It was our understanding during this entire hospitalization that Will would not benefit from treatment at another hospital.


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Will's first Christmas was a difficult time.  He experienced frequent fevers and was constantly fatigued from the medications and his numerous medical problems, especially his heart and respiratory defects.  We lived with the overriding fear that this would be his only Christmas.


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