Welcome Friends!
Justus B.
Washington
Birth Date - May 11, 2009
Main Diagnosis - Down syndrome, Tetrology of Fallot (heart condition)
THEME: Pooh and friends - bright colors
Biography
Justus was born on May 11, 2009. An uncomplicated pregnancy and
birth. A few short hours after delivery, we noticed his foot was so dark purple
that it was nearly black. The on call pediatrician rushed in and almost
immediately told us that Justus had a loud heart murmur and signs of Down
syndrome. I held Justus as we prayed over him, and he was then taken to the
nursery, as they prepped him to be transferred to the NICU in another city
nearly 45 minutes away. He was transferred via ambulance, and we were following
in another vehicle.
The next day, the echocardiogram indicated that Justus had Tetrology of Fallot
in addition to Down syndrome. Tetrology of Fallot (TOF) is a heart condition
involving four different conditions in one. He had a hole in his heart (ASD),
small pulmonary valves, a hole in his upper chamber and an enlarged heart. He
was on oxygen, and once stable we were able to take him home the following week,
with the understanding that he would need an open heart surgery soon as well as
another one once much older.
Justus was monitored the following months, and as his pressures mounted and he
was having more blue baby spells (turning blue) - it was determined that heart
surgery needed to be scheduled. Justus underwent open heart surgery for a repair
on September 17, 2009 at only four months old. It was the most difficult task -
handing over my sweet baby, knowing what would be happening. It was difficult,
but needed to sustain his life.
Justus did fine through the surgery, and was starting to recover. However, the
next day - Justus' sternum busted open again. He was rushed back to OR to repair
his sternum using steel staples. This would be his second intubation. On
September 20th, Justus started to develop a very high fever and his respiratory
rate shot up, as well as his heart rate. His oxygen levels dropped, and we were
in great fear that we were losing our precious gift. We prayed earnestly, as
they did another emergency intubation and put my baby on ice.
All through the night our son fought for his life. He steadily started to
improve. He was dehydrated, and so I took a medicine dropper and little by
little put water into his mouth. As the days moved on, he improved and was
finally stable enough to be released.
The next few months proved difficult as Justus continually battled bad bouts of
pneaumonias that always landed us in the hospital for a few days. However,
Justus is doing much much better now - and we are so grateful.
Justus faces at least one more open heart surgery, as well as possible catheter
procedures as well. He is currently attending physical therapy, and getting
stronger everyday. Justus is our gift, our treasure. Because of him, we went to
Ukraine and adopted two additional children with Down syndrome. Justus has
taught our family true benevolence and how precious every life is.
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