Evan's Story, chapter 9, Threats

Threats

Surely He hath borne our griefs, and carried our sorrows.

Isaiah 53-4

   Because of his kidney disease, he needed to take very distasteful medicine. The doses had to be correct. Either too high or too low would be bad. Therefore, the doctors had to know how much potassium and sodium was in his blood. Therefore, Evan needed frequent blood tests. That is, someone had to poke a needle into a vein and draw a blood sample. From the perspective of a young child, this was torture. How do you explain this to an infant? You can’t. All we could do was comfort him after the fact. Because of his small size, many lab technicians couldn’t draw the required sample on the first poke. This made a bad situation a horrible situation.

   Meanwhile, the doctors were alarmed about a condition common in children afflicted with spina bifida. The nerves that control bladder function are at the bottom of the spine. A dirty secret is that anybody with any level of paralysis has a problem with bladder control. In Evan’s case, the urine collecting in the bladder was threatening to back up into the kidneys. This could permanently damage the kidneys. They recommended a surgery to protect these vital organs.

   The surgery was to cut an incision over the bladder, cut a hole in the bladder, connect the bladder to the inside of the skin, and sew things back up. The result is a bladder that drains out a hole in his abdomen, into a diaper. The bottom line, bladder control would be sacrificed. Later, the operation could be reversed, if the patient desires it.

   This was going to be the worst experience Evan will have in his young life. First of all, the anesthesiologists needed to know the condition of Evan’s blood. On the day prior to this surgery, the lab technician had a very difficult time with Evan. Several pokes were required before an adequate blood sample was obtained. It gets worse. The lab tech poked herself with a contaminated needle.

   That evening, we received a call from a doctor at the Emergency Room at Arroyo Grande Hospital.  After explaining that the lab technician was poked by the needle, he asked, “Has your son ever had a blood transfusion?”

   Yes, he did have a blood transfusion. It happened when he was a newborn at UCLA. I remember how alarmed I was at the time. This transfusion was performed prior to our knowledge. If I had known, I would’ve insisted on being the blood donor. We are both A+ and I know I haven’t done anything to contaminate my blood with either the AIDS or Hepatitis B viruses. We were assured that the blood supply at UCLA was safe.

   When we confessed to the ER doctor that Evan did have a transfusion, he became unglued. He insisted that we bring Evan in so he could be tested for the AIDS virus. Further testing would mean several more pokes to our baby. We refused. Yes, we knew the ER doctor was only trying to protect the well being of the lab technician, but Evan had been put through too much pain already. We steadfastly refused. He emphatically insisted. We finally reached a compromise; Evan’s blood would be drawn the next day, while he was under anesthesia.

   When we brought Evan in for the surgery, he was his happy, normal self. After the surgery, he was crying in pain. This was the worst day since the dark days after his birth. We asked ourselves, “What have we done? What have we done to our baby?” All I could do was console him the best I could.

    A few weeks later, another doctor told us, “Mr. and Mrs. Price, I know this is hard, but his kidneys are safe.” That was the bottom line.

   Fortunately, Evan was too young to remember any of this. However, he does have to live with the consequences. With the hole in his bladder, he has to wear undergarments that absorb the urine. In other words, adult diapers and absorbent pads. So as he is growing up, how do you explain that to other boys? My worst fear was he would be subjected to taunting if his peers knew he wore some sort of diaper. Evan wasn’t exactly anxious to share this personal problem either. So we kept it a secret, through a session of scout camp and other overnight activities. This was not easy either physically or psychologically.

   Finally, prior to a scout camp, I tried a different approach. Without Evan present, I explained to the other scouts Evan’s condition. I was blunt. I made it clear that the operation may have prevented death by kidney failure. I felt I was taking a big chance, since not all of the boys were mature for their age. To my relief, every one of these boys gave Evan encouragement and support. Evan’s sanitary needs were a non-issue for them.

   As I write these words, I am reminded of my counsel from the Lord, “you will have to rely on your friends in the church.” I now realize this includes Evan’s friends as well.