Central Line Surgery

Sunday afternoon, the hospital called. Jefren’s central line surgery was scheduled for 10:00 a.m. the next morning.

Monday morning we got up at our usual time, meditated, showered, ate (except Jefren: no food after midnight). Around 8:30, we left for Iowa City.

This surgery was completely the opposite of the last one. The nurse in ambulatory surgery where we checked in was wonderful, comforting, helpful. When we told her about Jefren’s problem with anesthesia, she took me down the hall to look up who Jefren’s anesthesiologist would be.

“Paula Anderson,” she said. “She’s great—she’s who all the staff want if anything happened to us—we took a vote.”

We waited for a long time before Jefren was finally called. No one seemed as nervous this time, though we were.

They took us to the “holding room” where the pre-op patients waited. After last minute checking and verifying, Jefren, Janet and I were left alone.

There was another man waiting in the gurney next to Jefren. He was an older gentleman, and seemed so alone. I felt like he could use some companionship, and started talking to him. I asked if he wanted to listen to music while he waited— the nurse had shown us how to connect the earphones and change the stations, and I thought he might want to listen, too.

He did, so I found him some headphones, helped him find a station he liked, then went back to Jefren. A few minutes later his family arrived.

Sometime around 11:30, the doctor came in to introduce himself.

Dr. Frank told us the surgery would take forty-five minutes to an hour-and-a-half, depending.

“It’s pretty standard,” he said. “It can go very quick, or it can take a little working around.”

He told us they would be making an incision at the base of Jefren’s neck, then threading the tube down through his vein. Then it would come out in his chest.

He asked if we knew which type of connection the doctors wanted, but we didn’t. He decided to use the “Y” type, which has two openings. That way, if the doctors wanted to give Jefren two things at once, they could. They did, several times, so it worked out well.

He seemed like a nice man. He shook my hand, he shook Jefren’s hand. He asked us if we had any questions. Then he looked at Jefren and asked him if he had any questions.

Jefren asked him something; I don’t remember what. Dr. Frank explained it then checked with Jefren one more time. When Jefren said everything was fine, the doctor left.

“I’ll see you after,” he told Janet and me. “I’ll see you in just a few minutes —though you won’t see me,” he grinned at Jefren.

The Anesthesiologist

Paula, the anesthesiologist, came by a few minutes later.

“The nurse told me you wanted to see me?” she asked. She was a small woman with kind eyes.

We told her Jefren was very responsive to drugs, that it’s a family trait. Then we explained that it took until 6:00 p.m. from an 8:30 a.m. surgery for him to recover. We suggested that whatever she normally use for someone his size and weight, she try a lot less.

She seemed receptive to our suggestions, saying she would be careful. She told us there were some things she could do that she would try.

A resident with her wanted to get a sample of Jefren’s blood. Jefren asked if they could wait till after he was asleep.

“Sure,” the resident agreed.

Paula assured us she would do her best. She made sure we had no more questions, then she left.

A few minutes later, someone came to take Jefren to surgery. By now, it was around 12:30.

We Eat

We knew we had an hour or more before Jefren would be done. So we went to out to eat. Actually, I went out to Bruegger’s Bagels and got some sandwiches to go, then took them back to the Day of Surgery Lounge, where we ate. It worked out well, averting low blood sugar problems later.

It was a pretty straight-forward surgery, so we weren’t as nervous. Also, nothing major was riding on this one. After about an hour-and-a-half, the doctor came up for a short visit.

We met him in the conference room. “Everything went fine,” he said.

Which meant that my son now had a tube sticking into —and out of— his chest. I should tell you here that the whole idea of a central line really upsets me. Probably because it’s an intrusion— just like hypodermic needles. Whatever the reason, just thinking about it— let alone looking at it— made me extremely uncomfortable.

But it didn’t bother Jefren at all. Unfortunately, Jefren was so empathic he could pick up my discomfort. Amy said to tell him if he starts feeling uncomfortable, he should look at me and say, “Dad, stop that.” And ask me to leave the room.

So when the doctor said everything was fine, it meant Jefren had the central line, and I would have to live with it for a long time.

He was a nice doctor. He told us the surgery had taken about forty-five minutes, which was average— “Nothing unusual.” He asked us if we had any questions. I don’t remember if we did. Either way, it was a short visit, five, maybe ten, minutes. Then he was gone.

A Sudden Surprise

We went back out into the reception area.

A little while later, the receptionist came over and got us for a phone call.

“Mr. Adelson?” a woman said. “I’m the nurse in post-op. I’ve got a strange request: Jefren asked me to call you, but let you think he’s still asleep. So when you come down, pretend to be surprised.”

She hesitated. “We’re not supposed to call you until he’s awake,” she explained, then hung up.

We went downstairs.

As we approached, Jefren lay there, eyes closed. About five feet from his bed, he opened his eyes and said, “Surprise.”

He was completely awake. The difference between this and how he was after the biopsy was amazing: he didn’t even act like he had just had surgery. He looked bright, alert, fine. And he was playful.

In Post-op

We chatted with Jefren for a little while. He seemed in fine spirits. I did not look at his central line; fortunately it was hidden under his shirt. But his right hand bothered him— it was swollen to about three times its usual size. Since his IV was in his other hand, we knew it wasn’t from that.

We asked the nurse about it.

“It must be from the blood test they took before the surgery,” she said. She put ice on it and assured us it would probably go down soon.

It didn’t. Jefren couldn’t use his hand for months. When the swelling did go down, after several weeks, his hand continued to be numb. We asked Dr. Walton, Dr. Gladstone, and several other doctors about it: they all said that a blood vessel had probably been ruptured when the needle was put in. It didn’t happen often. Eventually, it would be okay, they told us.

It took most of Jefren’s chemo before it was.

But we didn’t know that yet. What we did know was that Jefren was doing great. The nurse kept bringing over warm blankets right out of a warmer to put on Jefren, who said he was cold. He loved the warmth— even though he already had three blankets. The nurse didn’t seem to mind.

3JC West

After a while, they took Jefren to 3JC West. That’s the wing for kids with cancer.

It was great: they had TV’s in every room, a classroom with two brand new computers, another computer in the hallway loaded with games. There was a large video library, a playroom with a pool table, and tons of games and toys. Down the hall, there was a kitchen stocked with snack foods. There were video game players hooked up to TVs on wheeled carts you could bring into your child’s room. And one thing more: nurses who loved kids.

“We have a policy on this floor,” our nurse told us. “If the kids are in pain, we give them something. With all they’re going through, they don’t need more pain.”

When Sandy (Randy’s mom) came to visit, she said, “It’s a wonder the kids ever want to leave.”

That was where they took Jefren.

Busy Afternoon

The afternoon went quickly. Once in his room, Jefren was kept busy. A stream of doctors and nurses came by, taking vitals and asking questions. Janet and I were given a tour. Gwen Davidsson, the other nurse from oncology, came by to set up a time to go over Jefren’s protocol, his medical needs, and more.

There were forms to fill out. Nurses explained the policies about visiting, which was basically anything within reason goes. We could stay overnight with Jefren, and use the bathroom and shower in the visitors reception room. In Jefren’s room, there were either long, couch-like window seats or chairs that opened into a bed to sleep on. If we both wanted to stay over, the nurse would bring in a cot. Outside the room was a shelf unit loaded with blankets, pillows, and towels we could use.

We could even store food in the kitchen refrigerator, as long as we put our names on it so it wouldn’t get confused with someone else’s.

The nurses showed us where snack foods for the patients were kept, in case Jefren got hungry.

Then, after all that, they showed us how to change the dressing on Jefren’s central line. I left the room for that part.

Luckily, that didn’t bother Janet—which meant she got to take care of it a lot. Jefren’s central line was a flexible rubber tube that came out of his chest. There was a little fibrous material just under the skin to hold it in place. To prevent any accidents, the nurses showed Janet how to tape down a loop in the tube so that if it did get pulled, the loop would come out instead of the central line. They also showed her how to put different ointments around the area to keep it from getting infected. Then they showed her the way cover the opening, first with gauze, then with a 4x4 inch special tape. Lastly, they told her to “flush” the central line with a special solution every day to keep the tube from getting clogged.

It was time consuming: getting everything ready, getting Jefren to lie still, and clean up afterward took the better part of an hour. As time went on, she got faster. Jefren liked Janet changing his dressing because she was used to what he wanted. He made her do it even in the hospital, when the nurses were supposed to. She did for a while, but with everything else she was taking care of, it became too much.

“You’ll just have to let the nurses change it,” she told Jefren.

It turned out for the best. One of his nurses could do Jefren’s dressing change in four minutes. Jefren liked that even better.

Neighbors

During the afternoon, we met the other family staying in our room. Most of the time, their privacy curtain was closed, but they opened it later in the afternoon.

They had everything with them: their CD/stereo, food, clothing, video tapes, the works. They had obviously done this before. In contrast, Janet and I just had the clothes we were wearing, and Jefren had some pajamas.

Their son’s name was Freddie, and this was his last treatment— he’d been taking chemo for a year. He was fine, his tumor was gone, and he had never needed surgery.

That was inspiring to us. We only chatted briefly. Shortly after, they closed their curtain again. In the morning, when we finally opened ours, they’d already left.

We stay over

When we left at 8:30 that morning to go the hospital, we dropped Eli off at school. Sandy was going to pick him up after, so he could spend the afternoon with Randy. “He can eat dinner here,” she told us, “and stay overnight, if you want him to.”

It turned out we did.

As the day wore on, Jefren needed more and more comforting. His chest and neck hurt from the surgery, but his swollen hand hurt him even more. He couldn’t hold a fork or a spoon— or the Nintendo controller. The nurses gave him pain-killers for the pain, which made him groggy and queasy. He wouldn’t touch his food.

Janet had been planning to stay overnight all along. As it turned out, I stayed, too.

Noise is no barrier to meditation, which is fortunate because of all the noise and interruptions while we meditated in his room. The day, then evening wore on. Jefren kept needing one thing after another— most of it comforting attention. Dinnertime, we found “food” in the cafeteria. Eventually, it just didn’t make sense to go home.

We called Sandy to tell her we were both going to spend the night and to make sure it was okay if Eli stayed over. It was—in the morning, she could swing him by our house to change clothes before school. Once we had that settled, we asked to talk to Eli.

“Is it okay with you if you stay over at Randy’s?” we asked him. Eli was a little nervous— he’d never stayed over anyone else’s house before. But he adored Randy, and knew it was something he could do for his brother.

“Yes,” he said, “it’s fine for me to stay.”

We told him we loved him, then said good-bye.

Jefren was going to be staying in the hospital for several days, first to recover from his surgery, then to start chemotherapy. That would last at least three days. Janet and I both felt we should be there for him.

The next day, school got out early. Sandy said she would pick up Eli and Randy after school and bring them to see Jefren in the hospital. When she left, I could ride back to Fairfield with them. That way, Janet would have her car in Iowa City.

Staying together

This was one of only three times one of us didn’t stay with Eli. All the rest of Jefren’s chemo, either Janet or I stayed with Jefren in Iowa City. The other one stayed with Eli, either in Fairfield, or, on weekends, in Iowa City. So both boys always got lots of one-on-one attention.

That was a priority for us: to keep our family together.

In the fall, when all this began, every night when Eli said prayers, he always added, “And we thank Thee, God, that you make Jefren have very much less pain, and that he gets better quickly so he’s healthy and happy and whole.”

Eli really loved his brother. Whenever Jefren came home from the hospital, Eli would get all excited, yelling “yeah” and running out to the car.

Our Overworked, Tired Doctor

Around seven-thirty p.m., Dr. Walton came by to check on Jefren. He told us that, assuming everything was okay, treatment would begin the next night.

When Dr. Walton left, I went with him into the hall.

“Jefren is very responsive to drugs,” I told him. From what Amy had said, and my own experience, I knew the regular doses could cause Jefren problems. I wanted to explain that to Dr. Walton.

I told him that Jefren would need less of the drugs than they are used to giving. My father can only take children’s doses of any medicine he needs. I’m so receptive that often just holding the bottle is all I need (depending on what illness I have). I told him Jefren was like that, too.

I explained as best I could. “A small dose will go a long way,” I told Dr. Walton.

But he didn’t hear me.

He said that while he appreciated my concerns, cancer cells didn’t respond according to heredity. That didn’t make sense to me— all the cells in your body are based on your DNA— how could they not respond to heredity? He said that the only way to do it would be to follow the proven formulas based on age and weight. He told me they would watch Jefren carefully, and make adjustments if necessary. Then he walked away.

What to do

I didn’t push it at the time, but felt it would cause problems. There was some roughness between Dr. Walton and me— something was not quite right. It didn’t feel smooth working with him. For one thing, I didn’t think he took me seriously. That meant he might go ahead and do whatever he wanted (the regular protocol?) regardless of what we said. Because we would be working together healing Jefren, I wanted everything smooth between us.

What could I do to smooth things out?

The doctors knew Jefren was an individual, but had no interest in finding out how he healed, or about his unique physiology or his individual needs. Their protocols are based on research, and I guess they didn’t want to mess with success.

I didn’t blame them, but knew that what worked for one person could be too much for another. We worried that could happen to Jefren— especially if the doctors didn’t listen to us.

I was stumped.

The problem

Janet and I talked about Dr. Walton’s response, but didn’t know what to do.

We wanted him to hear us and respond accordingly.

But he couldn’t, because he was too tired. Not tired because he didn’t sleep last night, but a deep fatigue from years of pushing himself too hard.

Somehow, looking at him, this information came.

Dr. Walton had a huge heart: he wanted to heal the whole world. He pushed himself, trying to do everything, thinking, “If I don’t do it, who will?” So he burned himself out. By the time we got to him, he could no longer hear us. I explained this to Janet.

“It’s like a thick wall of fatigue surrounds him,” I said. “Nothing subtle can get through.”

At that point, I just gave up on it. I couldn’t do anything right then, and we wouldn’t see him again until tomorrow.

Our first hospital night

Eventually, we went to bed. The nurse brought in a cot for Janet. I rested in the chair. At 1:30 a.m., Jefren— who hadn’t eaten all day— was hungry. We heated up some Spagettio’s in the microwave. After two bowls, he went back to sleep.

Janet fell asleep shortly after that. The light from the hall kept me awake, so I didn’t sleep well. Around 4:30 a.m., I stumbled into the conference room, closed the door, and slept for two hours.

Getting Guidance

I woke up early and meditated.

When I was done, I asked God for guidance: what could I do to help Dr. Walton hear what we needed to tell him about Jefren?

With that question in mind, I did the God-Self exercise from the card Amy gave us.

“God, my Love, show me how to serve You in this person.”

In the dark, I saw a band of bright green light at the edge of a sphere of golden light, surrounding me. I was told (no voice, just knowing) to walk toward Dr. Walton so he passes through the green light, then to stand so he is surrounded by the golden light for a little while– twenty minutes or so.

Also, I was told to direct love to him.

Almost as soon as I saw this, Janet opened the conference room door.

“Can you come to Jefren’s room now?” she asked.

“Not just yet.” I was still absorbing the information I had just gotten. “But let me know when Dr. Walton gets here, okay?”

“He’s here now,” she said.

“Okay—give me a minute.

She left, closing the door behind her.

I quickly straightened up the room, opened the door, and went out. I had wanted time to absorb what I had learned, but there was none. Trusting, I just went.

Serving God

Walking across the hall to Jefren’s room, I could see Dr. Walton inside, visiting Jefren. As I approached the room, I surrounded myself with golden light. At the farthest edge, I put the green color I was shown.

Then I walked into the room.

Doctor Walton finished his sentence, then said good morning. By now, he had been there several minutes and was about to leave.

I asked him a question. Instead of listening to the answer, I kept him surrounded by golden light (he had passed through the green as I entered the room). For the next twenty minutes, I kept directing love at him and kept the light around him.

Whenever he stopped talking, I asked another question. I don’t remember the questions— they were just to keep Dr. Walton there. After about eight minutes, I got a glimpse of his heart.

It was huge. It was solid and full— too full, it seemed. The “skin” stretching over it was stretched to almost bursting, stretched so much it seemed like the slightest touch would break it. A balloon filled with so much emotion, the slightest breath would pop it. And the color was wrong. Instead of bright red, it was a pale, sickly purple.

It scared me. I didn’t think it could take even a ray of golden light. Somehow, I was directed to send small, short sparks of light, a fraction of a second each, towards his heart. I did that once, then waited several minutes and did it again. Each time it was the same quick spark. After several times, I didn’t see his heart anymore.

At the same time, I had been directing love towards him and surrounding him with golden light.

After about fifteen minutes, he started chuckling while he talked. I had never seen him laugh— and only barely smile— before. Several more chuckles over the next few minutes, and then it seemed it was enough.

I stopped asking questions, and, after a few more minutes of chatting while I kept the light and love going, he left.

Then I stopped.

Did it work?

I asked Amy about it later.

“You read him completely right,” she said. He had been exhausted, she agreed.

“You gave him back the joy of life,” she told me.

I don’t really know what happened— or what I did. But a year later—after I had seen Dr. Walton, bright and cheerful— many times, Amy and I were talking.

“If you hadn’t done that,” she said, “he would have left his position— or had a heart attack, which would have been a shame, because he’s good at helping people.”

What about the chemo?

But that day, I was worried about Jefren overdosing from the chemo. When I told Amy about it, she said she thought it would be all right.

“What I’m hearing,” she said, “is they are open to changes later. So just go ahead and it should be all right.”

“Okay,” I agreed.

Then I let go, trusting in God to take care of it.

© David Adelson. All rights reserved.