Looking Out For Evan
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ExcerptsDuring that autumn, summer lingered with warm days that disoriented me with their seeming timelessness. On one of those days, I wondered aloud to nurse Jennifer about taking Evan outdoors. I had noticed the outdoor deck that appeared to be accessible from the 5-South playroom, but I had never seen anyone out there.

Jennifer gave a mischievous look. A few minutes later, as she carried Evan and I wheeled the pole loaded with his IV liquids and infusion pumps, we took him outside onto the playroom deck. He was a little uncomfortable with the breeze, but he was interested in that outdoor world. I brought him a soccer ball that had been left out there. Jennifer lowered him and showed him how to kick it. With her help, he did kick it several times. Until he tired, he was fascinated by it.

Jennifer went back inside, and I held Evan, swaying and shielding him from the breeze. After a few minutes, much of the tension I had been carrying seemed to be swept away. Evan’s body relaxed as he nestled against my shoulder. Jennifer returned and stepped around me. She and I looked at Evan’s face. In the breeze and sunshine, with the sounds of street traffic below, Evan had fallen into a peaceful sleep.


How much treatment was enough? How many tests were sufficient? We understood that the blood draws were necessary when Evan was ill with infections, and infections were a common thing for him because of the damage to his liver. On those days when he was miserable with infections, the misery was compounded by the pain of the blood draws.

We did question what seemed to us an excessive number of blood draws when Evan wasn’t being treated for a specific infection—it was not a matter of only the pain and trauma of the blood draw but also the blood loss. Look at a baby, and look at vial of blood. A vial of blood is a relatively large quantity for a baby. Frequently, more than one vial of blood was ordered. With that badly diseased liver, it was difficult for Evan to replenish his lost blood.

Less traumatic for Evan but still a concern for us was the number of sticks being done to his heels to get a few drops of blood to measure his blood sugar levels. In response to all these routine medical procedures, I wrote a family statement requesting that the number of blood draws and sticks be minimized. It made sense to Cathy, Matt, and Angela. They signed the statement, as did Amy and I. We showed it to a couple of Evan’s nurses and then posted it on Evan’s crib. Word spread quickly to Evan’s doctors, and, much to our relief, they were great about abiding by our wishes. The nurses, too, became more attuned to the procedures being done. When blood had to be drawn from Evan, his nurse usually would offer an explanation without us needing to ask. More than anything, we were happy that Evan was living with less pain.


Occasionally, Evan showed interest in the medical hardware that surrounded him. Three infusion pumps, each with battery backup, were mounted on his IV pole. The power cords from the pumps were plugged in to the electrical strip at the bottom of the pole, and the pole power cord was plugged in to a wall outlet.

Evan became captivated by the plug on the power cord of his IV pole. It was a plain black plug, not especially noticeable. One evening as we began our car ride, after unplugging the pump, I cleaned the cord and plug and handed it to him. We passed three electricians who were working in a 5-South corridor. They took notice of Evan, who was greatly interested in them. A couple of the guys were amused that he was holding the plug, and they even spoke to him. At the same time, I could see their worry. As strong, rugged guys who were not acclimated to this environment, they probably could see how ill he actually was. Clearly, they liked Evan, but this was not easy on them.

Evan grasped the plug for our entire ride through South Wing and Rose Tower, and over to the atrium. On our return, we again passed the electricians, who gave Evan kudos for continuing to hang on to that plug.


After Evan’s last central line replacement, Amy and I had realized that when Evan was taken outside 5-South, we should not expect the same level of care or protection as that provided by 5-South. For the most part, in the sedation unit and the x-ray and ultrasound labs, nurses and technicians who knew neither Evan nor us had acted with cool detachment. To a great extent, Evan had been simply a case passing through, and they had made little effort to comfort him.

Since Evan’s last trip to the sedation unit, the unit had been moved into a new space that was better designed. Plus, it no longer closed down at 5 p.m. The space had an open area with a large nurses’ station, and around the station were the patient rooms. Each patient had a private room with a large sliding glass door that could keep the room quiet while still allowing the nurses to look in. This would prove ideal for our situation.

Amy and I were again concerned about how Evan would handle the anesthesia; and, of course, there was the matter of how he would be treated in the sedation unit. On the afternoon of the procedure, things were running more than three hours late. It was past 4 p.m., and we didn’t yet appreciate that, to our advantage, the sedation unit and the corridors would get quieter in the evening. We accompanied Evan and two 5-South nurses on his trip to the sedation unit.

Amy and I realized that if we wanted Evan to be treated gently, we’d better ask for such. We decided to request three things from the sedation unit staff: (1) That, as much as practical, everyone stay quiet around Evan, even to the point that if they wanted to talk to us when we were with him, we would step outside his room; (2) that Evan be allowed to rest there as long as was reasonable; and (3) that only Amy would wake Evan when it was time to rouse him.