Christmas: A Change of Plans

Pulling into the hospital parking garage, I turned off the Christmas carols I’d been listening to and sent up a prayer: “Lord, put me where you need me, but give me your grace to do what needs to be done.” Help never more needed than tonight, I thought, rushing through the doors marked “Neonatal Intensive Care Unit.”

Although I was considered a veteran pediatric nurse, transferring from a cardiothoracic transplant floor to the NICU meant learning an entirely new body of information. After an intense and grueling nine-week orientation, little did I realize on this first night working autonomously in the NICU that I would need to apply that newly acquired information.

The assignment sheet revealed I had three patients, all “feeder-growers,” but no acute problems as the infants gained weight waiting for discharge. No problem, I thought cockily. What a joy to have a chance to nourish these little ones while cuddling and loving them up! I looked up to see the charge nurse walking toward me.

CHALLENGING ASSIGNMENT

“There's been a change in your assignment,” she began. “You now have just this one patient, Marilee*,” she said. 

“Uh, okay, but just one patient?”

“This one patient will be plenty...but I know you're up to it.” She smiled reassuringly.

I walked through the large intensive care room to B-3, one of the isolation rooms. The floor-to-ceiling sliding glass doors were closed with curtains drawn. I donned isolation gear, then carefully slid past the curtains. My eyes strained in the dim lighting. What I saw sent terror coursing through my veins! There on the large bed lay a huge baby. Unlike most NICU premature infants who were housed in clear Plexiglass isolettes, Marilee lay on an Ohio table. This table/bed was much bigger for larger babies who were attached to more complex equipment. An overhead dome with incandescent and therma-lights meant the baby could be easily visualized and kept warm. 

Marilee looked to be about six months old, bloated from steroids, no doubt, and sedated so that she would not inadvertently turn or pull out her tubes. A wide-lumen clear tube extended from the tip of her endotracheal tube to an angrily hissing and puffing oscillator. The oscillator--high-frequency ventilators that keep lungs permanently open—was no doubt one reason for the larger bed. Oscillators are usually used only for short periods because of an infant's delicate lung tissue. In Marilee's case, however, it had been keeping her alive for six months.

HELP, LORD!

It seemed like the child's every orifice was connected to something. I counted the drips: versed, fentanyl, prostaglandins, two antibiotics, dopamine and dobutamine, replacement fluids, maintenance fluids. Eleven IV pumps in one infant girl. I stroked her forehead gently. “I am going to take care of you, Marilee. It's going to be okay.” I begged then, Lord, please, let that not be a lie! In times like this, I find comfort and strength in believing God's promise, “God is our refuge and strength, an ever-present help in trouble” (Psalm 46:1).

How in the world am I going to handle this? I thought frantically. I haven't even heard report yet. As if on cue, Robin, Marilee's off-going nurse, entered the room. “Hi! Do you know this baby?” she asked.

“No, this is my first shift off orientation,” I explained.

“Your first shift off orientation and they gave you this assignment?” she asked incredulously, sighing. “Well, then, we'd better get started.” 

Robin explained that Marilee had surfactant B deficiency. She was indeed six months old and had been hospitalized since birth. She was on very strong oscillator settings; hope in the unit was dwindling that she would ever get a match for lungs. I remembered the diagnosis from my orientation, but it helped that Robin explained how it was affecting Marilee. She concluded, “The only effective therapy in cases like this is lung transplantation. But this family has a strong faith in God.” Robin continued, “They’re constantly at her bedside praying. Except for tonight,” she paused. “Tonight is the annual lung transplant Christmas party, and every patient who’s received a lung transplant at this hospital and all those waiting and their families are invited. Even the cardiothoracic surgical team is there! The staff felt it was important for Marilee's family to go to the party, partly for stress relief, and partly to engender new hope by seeing all the kids with new lungs acting and looking like normal children.”

“But,” I objected. “The party is being held in a downtown, isn't it? That's 10 miles away!”

“Don't worry,” Robin concluded the report. “New lungs will probably not be available tonight because of the party.” 

Alone with Marilee, I sighed, wondering where to begin. Everything needed to be assessed. I prayed, Lord, you said ask and you shall receive. I am not only asking, I am begging, please help me. Then I remembered and repeated Psalm 34:4, “I sought the LORD, and he answered me; he delivered me from all my fears.”

STARTING TO GET COMFORTABLE

My quandary of where to start was over when the first pump started beeping. I added another four hours of fluid to the beeping maintenance fluid pump, then began physically assessing Marilee. The respiratory therapist came in and did her assessment. She reminded me that Marilee could not be moved without her help, as it always took at least two people to reposition a child on an oscillator. 

Two hours into the shift, I was just starting to get comfortable with Marilee's care when her mother called. Yuletide carols blared in the phone's background. Marilee's family was at the lung transplant party, but they were miserable; they longed to be back at her bedside.

Although I was new to the case, Marilee's mom seemed to trust me, and we spoke with easy familiarity. She shared her frustration over the long wait for an organ and depletion of the family's financial resources, but also of her continuing faith and strength, believing in God's provision. I reminded her that Christmas meant renewed hope. Almost as an afterthought, I asked for her beeper number before we hung up. “You never know,” I said, trying to offer hope again.

TIGHT WINDOW OF OPPORTUNITY

Family members of a child high on the heart or lung transplant list carry beepers. The United Network for Organ Sharing has specific requirements, as the window of opportunity for securing useful organs is tight. For hearts and/or lungs, when compatible organs become available, the total time allowed from harvest to transplant is only four hours. In the event an organ match was found, the family needed to be at the hospital within 30 minutes.

Marilee’s mom and I hung up, knowing with reasonably high probability that there would be no transplant that night, certainly not for Marilee. They had already waited six months with no nibbles. And, they were, after all, at a Christmas party, and so were the surgeons!

WHOOPS OF JOY

Everyone's beepers went off about 30 minutes later. Debbie, the lung transplant coordinator, told me to call Marilee's mom and get her in ASAP. “I'm setting up surgeons, the operating room, and the harvest team,” she said. To me, ASAP means, “Always Say A Prayer.” I said a fast one as I dialed the beeper number, then I said another prayer. I reminded God that I had asked for help at the start of the shift, praying, “Lord, put me where you need me, but give me your grace to do what needs to be done.” The promise of 2 Timothy 1:7 states, “For God did not give us a spirit of timidity, but a spirit of power, and of love, and of self-discipline.” Gradually, a steady calm replaced my anxious trepidation, and I knew with certainty that with God's help, I would be able to do what was required to give Marilee the best possible chance at life.

A FRIEND FOR MOM

Marilee's family soon arrived. Julie, Marilee's primary nurse, also arrived. In fact, she was scheduled to have been there at 7 p.m. but called saying she could not come till 11, thereby resulting in my abrupt assignment change. She lobbied the charge nurse for a change of assignments so she could care for her primary patient, but the charge nurse gave me the choice whether or not I wanted to change assignments. I wanted to keep Marilee as my patient through the night. Although I was new to the NICU, I was not new to transplant nursing and had, in fact, just transferred from the cardiothoracic transplant floor. I knew I was probably the most comfortable with pre-transplant requirements of any nurse there. Although Julie protested, the charge nurse backed me up

When I caught up with Julie and asked her why she didn't come in at 7 p.m. as scheduled, she said she'd been shopping for Marilee and her family. She sported two bags of colorfully wrapped Christmas gifts for them. I reminded Julie that Marilee's family needed a friend as well as a nurse. “Why don't you be that friend tonight?” I suggested. Marilee's mom had built a bond with Julie over the past six months. So, that night whenever Julie's own assignment allowed the time, Julie donned isolation garb, came in, and talked quietly with Marilee's family, pulling one present after another out of the bags to the “oohs” and “aahs” of Marilee's family. It was a wonderful distraction from the pre-transplant preparations.

When we got word that the transplant was a “go,” Marilee's mom asked for a moment of prayer with anyone who wanted to participate. Because of isolation precautions, most of the staff had to stay outside the room, but we knew Jesus was in our midst. Marilee's mom reminded us of God's promise in Matthew 18:20, “Jesus said whenever two or more of you gather together in prayer, I am with you also.” Thus fortified with faith, we sent Marilee off. 

Many hours and much nursing care later, Julie and I met at the time clock, both exhausted.“Julie,” I stammered, “I'm sorry I didn't want to change assignments with you.”

“No, no, don't apologize,” she said, “You were right not to. I probably shouldn't have even asked. I was late, and I'd probably have been a basket case. I haven't worked up a transplant patient in years!”

Her words reminded me of Proverbs 12:25 “An anxious heart weighs a man down, but a kind word cheers him up.”

EPILOGUE

Marilee progressed well after the transplant. Although she would need immunosuppressant medications for life, her parents were thankful to God, the transplant host, and all who had aided in Marilee’s continuing quest for life. As for me, I settled into one of the unit's comfy loungers, snuggling and loving Marilee up on my assignment of “feeder-growers” right before her discharge. I contemplated the miracle of Christ's birth and the miracle of Marilee's transplant.

Post-transplant patients need a biopsy every three months, checking for organ rejection. Marilee and her family periodically came to the NICU to visit after the procedure. Seeing her thriving, I recognize that I was but an instrument of God's provision. I participated in one of the best Christmas gifts possible—utilizing my nursing skills to help save a life! I thanked God and asked him to please bless the family whose own loss led to this miracle for Marilee.

* Patient name has been changed.

Author Darlene Sredl was a professor of nursing at the University of Missouri, St. Louis when she wrote this article for the Journal of Christian Nursing. This account is a condensed version her article from the April/June 2015 issue.

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