Jeffrey was in the Canadian Army Reserves for six years and then began working in construction. Today, he is twenty-seven years old and an acquired brain injury (ABI) patient at The Salvation Army Toronto Grace Health Centre (TGHC). His brain injury was caused by a tumor that was diagnosed at Humber River Hospital (HRH) in July 2016.
Maria, his mother, recalls that before the diagnosis the family had witnessed a discernible change in Jeffrey’s personality. “The simplest things,” she said, “would agitate him, and he would cry almost every day; at times he would be up in the middle of the night crying.” Maria also noticed that Jeffery had begun to distance himself from his friends. Withdrawing further still, he stopped driving his car for almost two weeks. She believed Jeffrey knew there was something wrong but he wouldn’t share it with her.
When Jeffrey began to complain about headaches, Maria became more unsettled. This changed to extreme upset when, one day, Jeffrey fainted. His fainting continued: he fainted once at work and another time in her kitchen when he was helping to make dinner. Genuinely alarmed now, Jeffrey’s family persuaded him to visit the emergency department.
“All the tests indicated that everything was normal,” said Maria, “but while we were waiting for the results of the last test, Jeffrey, who was sitting in a wheelchair, began sliding down, moving uncontrollably.” She recalls her son telling her he was very scared and asking her to please help him.
The attending doctor in emergency rushed over to help Jeffrey, who was quickly becoming unresponsive. When the doctor asked Jeffrey if he could see the pen in front of his eyes, Jeffrey responded “No.” He was then immediately sent to get a computed tomography (CT) scan. The scan revealed that Jeffrey had a tumor (in the skull that projected into the third ventricle of the brain).
In early August of 2016, Jeffrey was admitted to Sunnybrook Health Science Centre (SHSC) for surgery. Prior to the surgery, it was determined that he needed the insertion of drains to treat the accumulation of cerebrospinal fluid (CSF) within the brain.
On August 3, 2016, Jeffrey was in surgery for nine hours. The surgeon told Jeffrey’s family that the surgery was a success; however, because of the invasive nature of the tumor, they could not completely remove all of it. It can be difficult to remove a tumour because it is usually close to or attached to such vital structures as the pituitary gland, the hypothalamus and the optic nerve. Despite its importance, in Jeffrey’s case, his pituitary gland had to be removed.
“The next three months at SHSC were challenging and difficult for Jeffrey and our family,” said Maria. He was monitored intently in the intensive care unit (ICU) for any signs of a stroke or brain hemorrhages; however, despite the constant monitoring, on the eleventh day after his surgery Jeffrey had a stroke. The ventricular drains that had been removed after his surgery were reinstated to deal with the excess fluid in his brain that had developed because of his stroke. Shortly after, Jeffrey needed to have a tracheostomy tube (ventilator) inserted to help him breathe, and because he was unable to eat food, he also required a feeding tube (gastrostomy tube or G-tube) to help nourish him.
During this period, Jeffrey’s family were unable to communicate with him. “Jeffrey’s lack of communication at the time worried us,” said Maria, “and we were unable to tell if he had lost his vision because, for the most part, he couldn’t speak. Even when he was able to speak, he sounded confused.”
A few weeks prior to being discharged, Jeffrey improved clinically and functionally. He became more alert; he listened more to conversations and interacted with staff. Despite now being able to communicate his needs, he was still dependent on the assistance of others for activities of daily living (ADLs): bathing, feeding and dressing. Performing such activities was made more difficult since, because of the tumor, his vision had become impaired — he was only able to see shadows and was almost blind. Still improvement continued, and Jeffrey was found fit to be discharged in December 2016. At the time of his discharge, he had his trach-tube removed; his G-tube remained, however.
Jeffrey was transferred to TGHC on December 24, 2016, for rehabilitation. During his first two weeks at TGHC, Jeffrey showed good physical improvement,” said Maria, “I noticed an immediate change. I recall that while in acute care, he was unable to move his left arm and leg.” In rehab, some movement returned.
Jeffrey would remain at TGHC until March 2017. He made good physical progress at TGHC and prior to his release he had his G-tube removed. During this period, Jeffrey required behavioural rehabilitation, and so he was transferred to a facility closer to his family home where he could receive behavioural therapy.
In August 2017 Jeffrey was re-admitted to TGHC’s ABI Program for additional slow paced rehabilitation.
Maria summarizes the past two and half years, “All the medical staff, both in acute care and the rehabilitation facilities that Jeffrey has needed have worked hard to help my son get better.” She goes on to say, “In the last two years, a lot has happened to Jeffrey — he has had two seizures since leaving SHSC. Also, Jeffrey has had high levels of sodium, causing an imbalance of his electrolytes. This required finding the right medication. We’re happy that the medication he is on now seems to be working. An MRI at SHSC a year after his surgery revealed that there is a small growth on the residual tumor, and Jeffrey to this day has not regained his eyesight.”
Maria is aware that Jeffrey’s behaviour and outbursts at times can be a challenge for the nurses and the health care staff. “I would like to thank the TGHC health care staff for what they do to help Jeffrey every day,” she said. If Maria raises an issue about Jeffrey’s care, they listen to her and it is addressed. She feels the nurses understand. “They are my friends,” she says.
Over time, Jeffrey’s behaviour has caused him to sometimes be unreceptive to rehabilitation; other times, he willingly participates. The goal now is to get Jeffrey more behavioural supports. He is about to commence work with behavioural specialists as an outpatient. The specialists will come to TGHC to gather data, doing so for a set period of time. In that timeframe, Jeffrey’s behaviour will be monitored 24/7. The data gathered helps the behavioural specialists as well as the health care staff at TGHC determine what triggers Jeffrey’s outbursts. It is hoped that by understanding his behavioural issues more, continuous rehabilitation can be introduced, and Jeffrey can work toward a level of independence.
By Gerry Condotta