From around August 10, 1998
As we prepared for our appointment with Dr. R, Craig and I packed an extra set of clothes in case they wanted to keep Adam for tests overnight. Our appointment was at 10a.m. When Dr. R came into the room I knew immediately that we would like him. He seemed so interested in knowing what Adam had been doing all summer and even was writing it all down. He looked Adam over and felt his liver using the "thump thump" method we had become accustomed to seeing them do. He checked his arms and legs and how wasted his muscles were becoming. He said to him, 'Adam, I'm going to put you in the hospital. You are a sick boy and you are going to need a liver transplant.'
Dr. R explained what was wrong with him in terms that a ten year old could understand and why he was putting him in the hospital. He even drew pictures for my very visual child.
I could see the fear in my child's eyes. All that I felt was relief. Relief to know that finally something was going to be done to help our son to get well.
They sent us to the lab to get more blood work done. This time all three of us had blood drawn from our arms. They would be phenotyping Craig and I to see what status we were in the alpha-1-antitrypsin menagerie. Adam had 13 tubes of blood taken and Craig and I had only 3 each.
The day was a hurry up and wait game. Take blood. Wait. Wait some more. Wait to see what the doctor thought. In the middle of it all a woman walked up to us, held out her hand and said "Hi, I'm Kathy Bendorf, the liver transplant coordinator." She indicated that we would get to know her very well. My thoughts were, "wow, this is really happening." But it was all happening so fast yet in slow motion.
Next we went to get a sonogram done. Wait to get into radiology. Get the sonogram. Then they wanted to draw fluid out of Adam's rapidly swelling tummy............................
They had to take a long needle and puncture into the fluid around Adam's organs, much like an amniocentiesis is done on a pregnant woman. It was another moment when your child has that "deer in the headlights" look in his eyes and there is absolutely nothing you can do to stop them from hurting him. They needed to see if the fluid in his belly was infected with bacteria which is a very dangerous condition.
He did indeed have peritonitis which is deadly if not caught in time. They told us that he would need intravenous antibiotic therapy for a week. We settled in for the long haul.
Tuesday evening I drove home to pick up the other kids who were staying with dear friends and to get a grip on our home life. Craig and I would trade places later in the week. Driving back through Kansas City reality hit me like a ton of bricks. I was overwhelmed with emotion and tears came in sobbing wretches. The radio was on and the song playing was Nancy Honeytree's 'Live for Jesus'. I sang along as I sobbed, "live for Jesus, that's what matters. And when other houses crumble mine is strong. Live for Jesus, that's what matters. That you see the Light in me and come along." I knew that those words were true and that God's strength would be what carried us as we trusted in Him.
Still, I had to cry for what lay ahead for my child.
I'll give you the rest of the story tomorrow.
I'm glad you're writing about this, Linda. I wasn't around then, although I was praying from here. Still, it's good to know some details, so thanks for sharing them.
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