narrative account of Will's health problems
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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).
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!).
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.
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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