I first came to know Carmelita and Jesse on the telephone. Their son, Zach, had been referred to us by his neonatologist for liver and small bowel transplant evaluation. From the moment I spoke to them on the phone, I could hear the love they had for their child, and the faith they held in their hearts. Twenty-four hours later, I met them in person, and I witnessed that same love and faith in their eyes, and saw it in the way they held their son. Three days later, Zach was listed for liver and small bowel transplant, and the race for his life began. Would he get organs before he succumbed to the complications of his liver disease?
Daily, our team supported him medically, and supported his parents emotionally. The waiting was agonizing, and Zach’s deterioration became more and more pronounced each day. Zach’s kidneys were failing, his blood pressure was dropping, and his lungs were retaining fluid. The incredible fluid build-up in his belly further made his breathing difficult. He became increasingly disoriented, first evidenced by his fussiness, then progressing to an altered mental status. Eventually, he rarely woke, and when he did, his eyes that had once been delightful, were dull and unfocused.
He required powerful blood pressure medications and intubation, and still we waited. I sat with Carmelita and held her hand as Dr. Langnas told her we were near the point when Zach would be too sick to transplant. They were the words Carmelita and Jesse knew may come, but how can parents ever be prepared to clearly see their child’s death approaching? Jesse had returned to Texas to work and care for the couple’s other children. Carmelita asked me through tears to please help her call Jesse and let him know it was time for him to be here. Several moments after we got off the phone with Jesse, he called us back. He told Carmelita to make sure the curtains were open —- he wanted to make sure Zach could see the sunlight before he died.
The sun shone upon Zach….
And as the sun rose on the morning of April 14th, Zach was taken to the operating room for transplant. Prayers had been answered, and Zach was going to get a second chance at life.
The following days after transplant were filled with critical moments, Zach still teetering on the edge. The subsequent weeks were an uphill battle, the entire transplant team working to nurse Zach’s kidneys, lungs, and organs back to health. His parents continued their loving, faithful vigil, and we all rejoiced as Zach’s delightful eyes came to life again.
Two months after Zach and his parents arrived in Nebraska, the sun shone upon Zach…..and this time, his eyes were open to see it.
Zach was discharged from the hospital at the beginning of July, off oxygen, on full tube feedings, with his wound completely healed. We have seen Zach several times in our outpatient clinic, and he looks amazing. Carmelita looks at Zach, and vividly remembers the last few months – the only smile bigger than hers is his.
This is what we do. This is why we do what we do. And we are honored and proud and blessed to do it.
Robyn J. Thiede, RN, BSN
Pediatric Clinical Transplant Coordinator
University of Nebraska Medical Center