Category Archives: Life’s disappointments

Nelson’s Day

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Many of you frequently ask, “How was Nelson’s day?” Some days are more dramatic than others, but during a typical day in the hospital, here’s what he’s doing.

Blood draws are frequent, starting at 5 AM. A lab lady knocks and enters every 4 to 6 hours, dragging a massive medical cart behind her. She searches for a good vein in Nelson’s bruised arms and sometimes has to make multiple tries. This is especially hard on Nelson during the night when she rolls in at 1 – 2 AM. It’s not a happy way to wake up.

As soon as the shift changes (6 AM for doctors, 7 AM for everyone else), The medical personnel begin their visits. They take Nelson‘s vitals again and again, change IV bags, check lung fluid accumulation, record it all on a computer and fuss over him till he wishes they would go away.

After that, a parade of other “helpers“ come and go throughout the day— a skin specialist to check on bedsores, a palliative care nurse to ask about pain meds, a social worker, a chaplain, a cleaning crew, a food server, and a transport person to take him away for x-rays, procedures, or tests.

The nurses are in and out multiple times every hour, delivering meds, fetching ice water, checking oxygen, updating the whiteboard, and unnumbered other tasks. And of course the doctors on Nelson‘s team of about 20 are part of the parade, too. When they come in, they often bring students or interns with them. Sometimes a nurse accompanies them, and the visitor headcount increases.

By the end of any hospital day, Nelson is thoroughly depleted. He asks for the lights to be turned off, even when it’s not bedtime. And his frustration mounts when every person who enters his room asks a series of questions. If he has just taken a pain pill for his constant lung pain, he finds it difficult to answer.

Tonight when Ann Sophie, Will and I were visiting, he told us that each day felt like an eternity and he was just marking time so he could call the day done.

 

Wanting to encourage him today, Ann Sophie suggested we all go to a rooftop patio that’s furnished with comfortable tables and chairs, just so Nelson (who loves the outdoors) could be outside for a while. It took a crew of helpers to free him from his many tethers, but he complied and seemed to enjoy the patio, once we got there. It wore him out in a good way, since so much time in the bed wears on him in a different way.

Nelson always thanks us, and his words about the patio were positive, but since he’s been in the hospital, there hasn’t been much sparkle behind what he says–unless he’s talking to baby Will. Then he becomes animated.

Little Will, approaching 4 months old, is a celebrity on the oncology floor. He’s only there with special permission. The nurses call him eye candy, and when he’s smiling, there’s no better mood-lifter than him. 

We’re praying Nelson will get to come home soon, but not too soon. The clot issue, still unresolved, and his swollen limbs will have to improve before it’ll be safe to leave the hospital. He knows that but then said, “This is all so hard.” And we agree.

“When the righteous cry for help, the Lord hears and delivers them.” (Psalm 34:17)

Little Victories

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As we suspected, Nelson is pressing the hospital staff for an exit-date from the hospital. Now that he’s been transferred from the ICU to a regular hospital room, there’s a new set of physical goals to reach. For example, he needs to be weaned off the high density oxygen without his numbers slipping below 95. And he needs to be able to walk around without his heart rate rising above 120. Nelson is doing everything in his power to meet these requirements, but most of it is out of his control. He did have several victories today, though.

1. The cancerous nodules in both lungs that were “too numerous to count“ have all significantly shrunken.
2. The swollen lymph nodes on both sides of his neck have also gotten smaller. They can’t be felt anymore from the outside.
3. His platelet count is up and all other blood numbers are stable.
4. He needs one less blood pressure medicine to keep his pressure up.
5. Two catheters have been removed, along with one IV line.
6. The lab lady was able to find a vein on her first try for this morning‘s blood draw.
7. Pain meds are no longer being given by IV but only by mouth.

But sadly, today wasn’t only about victories. We received one negative piece of news that both shocked and disappointed us: Despite being on blood thinners, Nelson now has a large blood clot under his clavicle bone area.

When his team gave him the details about this, he became overwhelmed with anxiety. After the doctors left, leaving his mind swirling, he called and told us he couldn’t handle “all this“ anymore, because there was no end in sight. They had asked him questions about making choices for moving forward, and he had been unable to organize his thoughts enough to answer. He seemed on the verge of panic, so we quickly mobilized and were in his room in just minutes.

He was still feeling anxious, telling us he felt like his hospital room had become a prison he could never get out of. But he was relieved to see us, especially his beloved Ann Sophie.

Just before we arrived, they had done a 90 minute ultrasound of his swollen arm, looking closely at the clot. They learned it was not just a small, marble-sized clot but one that reaches into four different veins: the internal jugular vein, the subclavian vein, the auxiliary vein, and the upper arm cephalic vein.

As a result, blood is flowing into Nelson‘s arm and legs but can’t get out. His limbs are so swollen now that he virtually can’t bend them.

The head nurse came in to answer more questions, bringing a print-out to help us understand. Once we saw the scope of the problem, we quizzed her at length about how to “fix it.“ She told us three teams of oncology experts would be arriving tomorrow morning: vascular, pulmonary, and radiation. All of them are familiar with Nelson‘s case, and together with him, they will structure a plan. We hope to be there listening in.

Before we left tonight, Ann Sophie questioned Nelson‘s nurse about his anti-anxiety meds, and they promised to be sure he had enough. Nelson never asks. He just carefully thanks every person who enters his room, telling them what a good job they’ve done and how he’s thankful for their care. This goes for everyone from medical people to food servers to cleaning crews. We’ve watched him bring light and goodness to each one.

Nelson is making a difference in the lives of many at the Clinic. As the old Sunday school song says, “Brighten the corner where you are.“

And despite today’s bad news, that’s what he’s doing.

“You are light in the Lord. Walk as children of light.” (Ephesians 5:8)

And we thought yesterday was busy…

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Today began shortly after midnight when Nelson woke to visit the bathroom. His comments to Ann Sophie didn’t make sense, and though the apartment was very warm, he was shivering. He asked for one blanket and then two. When she felt him, he was burning up–never a good sign.

He was also struggling to breathe, even after the left lung had been drained yesterday afternoon. Ann Sophie said he was doing rapid panting in a strange way and was unsure of himself. 

Ann Sophie called 911, and within 5 minutes the EMTs were at the apartment door. Baby Will awoke with all the confusion, and in this panicky moment, Ann Sophie knew she couldn’t go with Nelson to the hospital. decided to call an ambulance. The EMTs took over with confidence, and tending to Nelson’s needs. His oxygen level was at 80 and heartbeat dangerously slow. He’d been using Luke’s oxygen at 3.0 with no help, so they put it at 5.0. Nelson willingly went with them.

At the ER, they worked to stabilize him but all the new developments were overwhelming him faster than they could counteract them. After several tests and more blood work, they suspected a blood clot in the lung.

Time went by and when they were unable to determine the main problem, they admitted him to the hospital–for the third time. His swelling, which seemed to be lessening just the day before, seemed much worse. It was in his face, arms, chest, back, legs, feet, all of it. He was still panting, quickly becoming unnerved and anxious by his effort to breathe.

Unwilling to give him anything to ease his stress because it would suppress his heart further, they did more tests. What they found was a full left lung, the one that had been drained just hours beforehand. They removed another two+ liters of fluid to relieve his breathing stress, but that didn’t seem to help. The cancer was producing fluid at a much faster rate than before, and in addition to the lung fluid had begun filling the area around his heart, a matter of grave concern.

His blood pressure was extremely low, and they couldn’t get it up. They began considering a risky surgery to drain fluid from around the heart.

By this time Ann Sophie, who had been up through most of the night, wanted desperately to be with her husband, but who would watch baby Will? I had gone back to Michigan to receive our British relatives, son Hans and his family of eight. They were coming to the USA for the first time in four years to join the rest of us on a family vacation. So there was no extra pair of hands to help in Minnesota.

That’s when the guy who has been our saving grace again and again in these last weeks suddenly appeared saying, “I’ll take care of the baby. You go see Nelson.”

Luke worked his magic once more, and he stayed throughout the day, working hard to win Will’s approval, which was no small struggle. As Ann Sophie sat next to Nelson in the ICU holding his hand, she sent back a message that there were15 people in his room at once, working to save his life. For us, that confirmed he was in the best place he could possibly be. 

Nelson’s blood pressure was dangerously low, breathing was still labored, and their next step would be to intubate him. We prayed against that, a prayer God chose to answer

Throughout this day there have been ups and downs. They thought it was a blood clot in the lungs but then disproved that. Then they made the decision to drain some of the fluid from around his heart. We were overjoyed when the report came
back that the procedure was successful and his labored breathing had finally eased. A shunt was left in, in case future draining is necessary.

We are well aware that Nelson could have died last night. Since he is still very much alive, we’re singing praises to the Lord, who chose once again to let him live.

„The Son gives life to whom he will…“ (John 5:21)