LEVI SHAWN GOFF

Levi was born July 1st, 2007
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On July 14th, 2007, after a day out getting groceries, my husband, Robin, noticed Levi looked bad
when getting him out of the car when we arrived home. He brought him to me and I knew something
was terribly wrong. He was a paleish green color. He was cold to the touch and he was limp and
lifeless.

We rushed him to the ER. The triage nurse knew immediately that something was wrong. The ER doc
was spitting out orders before we even made it to the room. The nurses had a terrible time drawing
any blood. He was probably poked between 30 and 40 times. His temp was taken rectally and it was
only 94 degrees. Soon after, we noticed a large amount of blood in his diaper. Much more than trauma
from the thermometer could have caused. Blood was coming from somewhere else. A blood
transfusion was ordered and we were told that a transport team was on there way from the nearest
Children's hospital about 1 1/2 hours away.

He was transported by ambulance to Kentucky Children's Hospital. He arrived there about 3am on
Sunday, July 15th. We drove and arrived a little later. Once we got there, docs told us they were going
to run some tests and that a surgeon had been consulted and that surgery may be a possibility. He had
a barium enema and they found a blockage in his intestines. They told us that he would have to have
emergency surgery. His intestines were twisted on themselves. They also said that they may have to
remove part of the intestine if blood flow had been blocked for too long.

After the surgery, the surgeon came out and spoke with us in a consultation room. He said, "He made
it through the surgery ok, but the news isn't good." All of his small intestine had lost blood flow. They
had already died. They were dark red instead of the healthy pink. He said he left the intestines outside
of the body in a "silo" (a clear plastic bag) so they could be monitored for the next 24 hours for any
change. He warned us that the likelihood of that was slim. Without any intestines, the surgeon said
Levi would only make it a couple of days.

We prayed and cried for the next 24 hours. With no sleep since Saturday morning, we went into
Tuesday morning. We were exhausted and dreaded the news. We had prayed for a miracle, that the
intestines would miraculously turn pink, but knew that the chances of that were slim to none.

We met with the surgeon that morning and he inspected the intestines and told us what we already
knew; NO CHANGE. He said we had a couple of options, 1) We could let him go peacefully under
sedation and pain medicine. or 2) We could try to make it to a transplant. The second choice would be
a long hard road and the surgeon didn't sugar-coat it. He said the odds would be against him. There
would be infections; probably lots. He would be totally dependent on TPN (IV nutrition) 24/7. He
would have lots of doctor appoinments and hospital stays. He would have to make it to a year old and
weight approx 20 pounds.

We made the only choice that was an option to us. We weren't going to sit there and let our baby die
when the miracle we had been praying for was falling in our lap. We knew it would be hard, but were
very determined to do whatever it took to save him.

He went back to surgery shortly after meeting with the surgeon. All of his small intestines were
removed. All he had left was the duodenum (bottom of the stomach) and about 90% of his large
intestine. The duodenum was stitched to his large intestine and he was stapled up. A few days later he
went to the regular pediatric floor and was out of the PICU. He had a central IV surgically inserted
called a broviac. This would be how he receives his IV nutrition. (And a major concern for infection.)

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