Michele Maddox
My journey in helping one special neurological patient
By Michele Maddox

“Most of the health-care team felt that Zack’s parents made the wrong decisions and that he should be allowed to die. My thoughts were, If his family could have this much faith, then so can I.” Michele Maddox, RN, BSN

Just weeks earlier, Zack* had been a normal 16-year-old. Then a visit to the pediatrician for frequent headaches led to additional testing and a diagnosis of medulloblastoma, a type of aggressive brain tumor that affects children and adolescents. Zack initially did well following a craniotomy for resection of his tumor, but he developed elevated intracranial pressure (ICP) and meningitis a few days later. He was transferred to the Neuroscience ICU (NICU), and I became involved in his care. As a nurse in the NICU for over three years, I knew that Zack and his family would need expert clinical care, psychological support and education.

Zack’s neurological status declined even further. He opened his eyes and sometimes blinked to command, but the rest of his body had no movement or response to pain. The resident ordered an MRI to determine the cause of this deterioration and establish prognosis. Zack’s parents were very concerned about him going for this test and I was concerned as well; his ICP remained elevated and he was experiencing episodes of profound bradycardia. After talking to the residents and getting nowhere, I contacted the attending neurosurgeon. He decided that the MRI would not change Zack’s immediate care and should be delayed until his condition was more stable. Zack’s parents were happy that I had talked to the physicians and we had come to a safe decision for their son.

Over several days Zack became more stable, and I suggested to the physicians that we could now safely obtain the MRI. His parents remained very concerned about the transport, because in their eyes he was still very unstable. I explained to the parents that I would stay with their son and would do my best to keep him safe. His mother was very exhausted from many nights without sleep and just broke into tears. Family members do not usually travel with patients in our adult ICU, but I felt that this was an exception and told her that she and her husband could accompany Zack This relieved their concerns and we made arrangements for MRI.

When the MRI was completed, I contacted the attending. Our fear was that the MRI would reveal a brainstem infarct, representing permanent damage with essentially no hope for improvement. No cause for Zack’s current paralysis was apparent on the MRI. We discussed the results of the MRI with Zack’s family. They were relieved by the results, but they still had many questions. They asked about additional treatment for the cancer, and we told them that Zack was currently too unstable to receive either chemotherapy or radiation.

I continued to care for Zack on a constant basis and came to know his family well. I treated Zack as if he was completely aware, explaining everything that we were doing and often talking to him about girls and cars. We played his favorite music and decorated his room with pictures and posters. I updated Zack’s parents daily on my assessment and what the plans were. I was always very honest with them and assured them that I had Zack’s best interests in mind. I have two children of my own and always kept the phrase “if this were my son” in the back of my mind. Zack’s parents and grandparents had great faith that things would get better, and they were willing to wait it out no matter how long it took. His mom told me that Zack saw “The Light” before he became unconscious and told her that everything was going to be okay.

As time passed, Zack continued to have no movement and remained on the ventilator. The physicians and other members of the team were giving up hope. Zack had been in the ICU for several weeks and choices needed to be made. The options were tracheostomy and PEG placement, or palliative care. I knew that Zack’s parents were not ready for these decisions because they were still asking, “What went wrong and why?” I talked with his parents and told them that we needed to make some decisions for the comfort of their son. The first thing we discussed was what they wanted for Zack; we all knew his prognosis was poor and he had tumors that would eventually take his life. It was Christmastime, and his mom said that he had repeated many times before he became unconscious that he “just wanted to go home.” I explained to them that we could arrange for him to be taken home if that’s what they wanted. I also explained the tracheostomy and PEG and that these procedures could be permanent or short-term.

Zack’s parents decided to proceed with the tracheostomy and PEG in hopes of getting him well enough to receive radiation therapy to shrink his tumors and to give them extra time with their son. Most of the health-care team felt that Zack’s parents made the wrong decisions and that Zack should be allowed to die. My thoughts were, “If his family could have this much faith, then so can I.” We can never say what choices we would make until we are put in that position.

Once he was weaned from the ventilator, Zack was moved to our neuron-intermediate unit. I worked with Zack’s parents and the health-care team to ensure that this transfer went smoothly, and I continued to support Zack’s parents when he moved to the acute-care unit. He was discharged to a rehabilitation center and received six weeks of radiation therapy. I recently learned that Zack went home and has started talking and moving his arms and legs. His mother is administering chemotherapy twice a day, and his most recent MRI showed no signs of cancer. I actually got to talk to Zack on the phone. Although he didn’t remember me or his stay in the NICU, it was such a good feeling to know that he had improved that much. I admire his parents for not giving up on him even though everyone else thought there was no chance of him getting better.

Working with neurosurgical patients is always challenging, but the challenge is even greater when the patient is a child. This situation was even more difficult because many members of the health-care team did not agree with the decisions made by Zack’s parents. I was an advocate by supporting and educating Zack’s family, communicating assertively with the health-care team and providing expert clinical care. Through my efforts, the health-care team was better able to meet the unique needs of this patient and his family.

*To protect patient's privacy, a pseudonym is being used.