When the transport team arrived from LLUCH they briefly
told us that our son was born with Hypo-Plastic Left Heart Syndrome (HLHS),
which means the left side of his heart never completely formed and only because
of a tiny flap was he still alive. As
they rushed him out and we watched the helicopter leave with our son in it our
world changed forever.
The next day we sat down with a team of experts to
discuss Evan’s case. They told us 3 options; transplant- which could be a
waiting game and there was no guarantees, compassionate care- which we take him
home and love him until the Lord takes him, or the Norwood procedure- 3
separate open heart surgeries that would redirect the blood flow by using the
right side of the heart only, which because of how strong he was, THIS was
their recommendation. After a split second of discussing with my husband and
the doctors, we agreed to go forward with the open-heart surgeries. Dr.
Razzouk, the surgeon, prayed with us that the Lord use him, to help our son. When
Evan was 5 days old he had his first open-heart surgery. 9 days after surgery
we went home, knowing we would be back all too soon.
Evan’s second surgery was scheduled when he was 6 months
old, and with a blink of an eye we were back at the hospital handing him off to
the surgeon once more, not knowing if we were ever going to see his beautiful
blue eyes again. Praise the Lord everything went according to plan and only
after 4 days we were going home with our fragile baby again. This time, there
were complications. Two days later, we came back to the hospital to find out
that there was 4 oz of fluid surrounding Evan’s heart. It was putting so much
pressure on his tiny heart and lungs they had to admit him immediately to drain
the fluid.
This stay was longer, a total of 3 weeks and another
open-heart surgery before the fluid was no longer building up and we could go
home once more. This time we got to stay home and in our little sanitary bubble
until he was 22 months old.
The final scheduled surgery, the Fontan, was on July 8th
2010, and we were so terrified. Our little warrior Evan had been so strong but
the “what-if’s” were tearing us apart. By the grace of God, the Fontan went
well and 4 days later we were on our way home from surgery, for our hopefully
last time!
Evan is a wonderful, energetic, onery and stubborn little
3yr. old that has changed our lives in so many ways and made us better people
because of him. He is our Warrior. Little Warrior Evan!
Love the Buzz Lightyear costume. He is cute.
ReplyDeleteMy son was a patient in the Loma Linda Cardiac unit(5800) when he was in surgery they brought my husband and I into a tiny room to wait, while in there I saw your son's picture on the wall and read his story, seeing his story gave me hope for my boy. Thanks for sharing!
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