Spencer Kult
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Spencer Christian Kult was born on a very cold January morning in St.
Louis, but it wasn’t until 5 weeks later that his parents, Chris and
Tina, were told of his complex heart defect. Spencer’s pediatrician
heard a loud murmur during his routine 4-week exam and referred the Kults
for an echocardiogram (ECHO). The information from the echo would change
the Kult’s lives forever.
Spencer was whisked away to the pediatric intensive care unit (PICU) to
be given oxygen and to start an IV. His
oxygen saturations (SATs) were in the low 70s (normal is 95 to 100).
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Spencer had the most beautiful olive skin. But when it was
combined with jaundice his first few weeks, his skin tone masked another clear
indicator of CHD…duskiness. Spencer was stabilized and readied for transport
to Cardinal Glennon Children’s Hospital. Chris and Tina were informed that
Spencer had a very complex heart defect that included only one ventricle. He
would need to have possibly 3 heart surgeries to help his heart.
Within 24-hours of arriving at Cardinal Glennon, Spencer
underwent a heart catheterization to determine his exact anatomy and also have a
procedure called a blade septostomy. The doctor cut Spencer’s atrial septum
with a blade through a catheter in his femoral vein. By enlarging a hole between
his atria, Spencer’s SATs went from the low 70s into the 80s and then climbed
as high as 93. Spencer started lasix and digoxin and he was released within 5
days.
Chris, Tina, and Spencer went to Cardinal Glennon’s
cardiology clinic every month to check his progress and adjust his medicines
when he gained weight. It took 9 months before Spencer started experiencing
shortness of breath that determined it was time for his first surgery. He had a
second catheterization on his first birthday. The hemi-fontan followed six weeks
later on March 16, 1998. The Kults were home in a week.
Spencer thrived for the next two years and grew into a
precocious toddler. During that time, Tina started attending a local support
group at St. Louis Children’s Hospital and participated regularly on PDHeart.
In October 1999, she wrote a letter to Missouri’s governor requesting a
proclamation for “A Day for Hearts: Congenital Heart Defect Awareness Day.”
Spencer presented the framed proclamation to the Cardinal Glennon cardiology
staff in February 2000 while preparing for an unexpected surgery.
Spencer’s Extra-Cardiac Fontan was performed on March 6,
2001. He was extubated the next day, and it looked like Spencer was on his
typical path to recovery. However, he suffered a stroke the 4th
morning post-op. Fortunately, Spencer recovered very quickly and there was no
permanent damage. Once he was transferred to the floor, the effusions kicked in.
The final chest tube came out 3 weeks post-op. Spencer’s hospital stay was 24
days with a follow up appointment scheduled just 3 days later.
Spencer’s effusion was worse and he was admitted during
the follow up. The Kults waited a week while Spencer’s INR slowly went back
down into an acceptable range before the surgeon could “tap” the fluid from
Spencer’s lung. During the procedure, Spencer’s intercostal artery was
nicked. He was rushed back to PICU, where he was given a chest tube and blood.
Spencer had surgery the next morning to stitch the artery. He spent 2-1/2 more
weeks battling the effusion. He finally went home at the end of April.
The summer flew by, but the effusion reappeared. Spencer
was admitted again in October. Two weeks stretched into 4, and 4 stretched into
7. Spencer went home the weekend before Thanksgiving on daily antibiotic
treatments for an infection. The effusion was still hanging around, but not as
bad as it was in October.
After Thanksgiving, Spencer needed to be readmitted because
of horrible abdominal pain. The restrictive chylothorax diets of nothing by
mouth, no fat or very low fat had inflamed his gallbladder and pancreatic duct.
His gall bladder was removed and Spencer spent two more weeks in the hospital.
Spencer cruised through the winter. His diet changed at
each appointment depending upon his chest x-ray. Then he became very ill at the
end of a vacation. His lingering effusion coupled with a reaction to a different
medicine sent him into severe respiratory distress. He was better after a night
in the hospital, but as long as he was admitted the doctor wanted to “tap”
the effusion again. Spencer spent 5 days in the hospital and returned the next
week for a cath.
Spencer’s fenestration had closed too early and the
doctors all felt that redoing his fenestration would help the effusions.
However, his AV valve was leaking again. They felt that the increased blood flow
from the new fenestration might cause his valve to leak even more. Spencer was
scheduled for another open-heart surgery on May 15. His surgery took longer than
expected. The effusion had created extensive scar tissue and it took 3 hours to
chip through the tissue. To repair the valve, it was necessary to stop his heart
again. At first everything went well, but his heart rate sped up when attempting
to take him off by-pass. The surgery proved to be a bit much for Spencer’s
stressed heart. He came out of the OR on ECMO.
Spencer experienced several arrythymia episodes and could
not hold his own when attempting to wean him off ECMO. The Kults decided to list
Spencer for a heart transplant.
Spencer received his new heart on May 28, 2002. His chest
remained open until June 5. Slowly Spencer was getting stronger and more alert,
but his kidneys had failed to start working again after his transplant. Spencer
went back to the OR on June 19 and had a dialysis catheter placed in his pelvis.
There was talk of extubating Spencer until on June 26 when he experienced a
life-threatening GI bleed. Spencer was again put under sedation and medically
paralyzed. He was allowed to wake up again around the 4th of July.
Even though Spencer’s strength was slowly coming back, he
continued battling the ventilator and the dialysis was slowly failing. On August
3, 2002, Spencer was accidentally extubated and he did not rally back as quickly
as he had the week before. His blood pressure was too low and the dialysis was
in crisis. By the afternoon he was asking for Popsicles again.
Chris and Tina had told Spencer that when he had the
breathing tube he would not be able to talk. Therefore, Chris taught Spencer to
give a “thumbs up” sign when things were going okay, but a “thumbs down”
when they weren’t. They also did the sign for “I love you.” For 2-1/2
months, Chris received the “thumbs up” sign whenever Spencer was conscious.
Sunday, August 4th was the first time Spencer gave Chris the
“thumbs down” sign. Spencer’s blood pressure was steadily drifting down.
Any medicine they could give to raise his blood pressure would compromise the
blood flow throughout his body. With dialysis failing, it was just a matter of
time before all his other organs would start failing as well.
Phone calls from around the country were received in room
2916 that afternoon. Spencer listened as his grandparents and all his aunts and
uncles said good-bye. Chris and Tina told him that he would soon be going to be
with his other heart friends and Jesus. Spencer nodded his head in understanding
and told Chris and Tina through a series of nods and hand squeezes which toys he
would like to take with him to Heaven. Then he gave them the sign for “I love
you,” smiled, and closed his eyes.
Return to Spencer's Fund
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