Spend a day walking in the shoes of Nurse Susi as she travels across Jakarta to provide palliative care for children living with serious and terminal illnesses. The photo journals are by Rachel House volunteers Janel Ang & Jevon Chandra.
“These are for Risa* and Nina*. I know they will absolutely love them!”, says Nurse Susi with glee after selecting two plush toys from the toy donation box. Selecting toys is part of her daily preparation ahead of visiting her patients. For many of Rachel House’s children, these fuzzy friends from the nurses will be their only toys, to hug and love.
Lugging heavy bags, Susi and nurse Ria begin their day of visits to patients in their homes across Jakarta.
Between them they are carrying a big bag with infant milk formula, diapers, and toys for their patients. On their backs are the medicines and medical equipment for the day.
Today’s first patient is Risa – a little girl living in a neighbourhood by the water canal – where the streets are lined with colourful bar fronts. By night, these quiet lanes turn into a buzzing scenes of nightlife and vices.
Arriving at Risa’s tiny home, the nurses are glad to have brought a little fuzzy bunny to cajole Risa who had just woken up, and was a little grumpy.
Nurse Ria gently eases a pulse oximeter onto little Risa’s finger to measure her oxygen saturation, as the little one moans and grumbles in her mother’s arms. The heat in the cramped and poorly ventilated room is suffocating for all, especially for Risa, who was unwell. While Nurse Ria takes Risa’s vital signs, Nurse Susi diligently takes notes of the patient’s condition. These medical records form a critical part of the care provided by Rachel House’s nurses, who work closely with the patients’ primary doctors to ensure that pain and symptoms are well managed at home, allowing them to live with optimal quality of life.
Another key part of the nurses’ work is to check and count the remaining medication at home, to determine if Risa’s mother has been giving Risa the medication in the prescribed manner. This also helps the team understand how Risa has been responding to the medication.
After two hours at Risa’s home, the team stops by the Rachel House satellite office in North Jakarta for lunch. Nurse Susi points to a map on the wall showing the areas where her patients are located.
For our second visit of the day, we travel to Adi’s house. On arrival, Nurse Susi finds her patient sound asleep. She gently tries to wake 12-year-old Adi from his nap, but today he is tired and not willing to be disturbed. Nurse Susi has to conduct her medical examination using a pen flashlight to guide her vision in the dark little home where Adi and his family lives.
As Adi continues to rest, Nurse Ria gently slips the thermometer under his arm and Nurse Susi checks his pulse and breathing with her stethoscope. Adi has struggled with skin and ear infections – which are complications of his serious illness – since birth, and they require close monitoring. Before wrapping up the visit, the nurses count the medicines, calculating to ensure there is sufficient medications until Adi’s next visit to the specialist.
Afterward, we journey to the third patient of the day, a lovely young girl named Nina*, in a tiny home just as cramped as the first two. Inside the house, nurse Susi finds a spot in front of a motorcycle parked inside the house, and examines her patient’s condition and takes notes.
While the nurse kit contains essential medical equipment for the patients, toys are equally important part of the nurses’ toolbox – to bring cheer and help the nurses build trust with the children. As Nina plays with her toy, the nurses take the time to be with her parents to find out how they have been coping, both emotionally and financially. The parents and caregivers’ wellbeing is particularly important to ensure the ultimate wellbeing of the child.
After her medical check-up is completed, Nina climbs onto Nurse Susi’s lap and asks to look at the colourful cover of the patient record notebook. The close relationships that Rachel House nurses have built with their patients serve as a beautiful reminder of the loving and dedicated work that they do to ensure that no child has to live or die in pain.
*All patient names have been changed
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