Nov 12, 2019

A Day In The Life Of A Palliative Care Nurse

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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. (Photo 1)

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. (Photo 2)

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. (Photo 3)

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. (Photo 4)

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. (Photo 5)

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. (Photo 6)

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. (Photo 7)

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. (Photo 8)

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. (Photo 9)

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. (Photo 10)

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. (Photo 11)

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. (Photo 12)

 

*All patient names have been changed

 

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Sep 25, 2019

A Soothing Balm - Didi's Story

Little Didi* has been living with HIV and serious lung infections all his life – but thanks to the tireless support of nurse Rina and the team at Rachel House he can now breathe easy and focus on his homework. A story by Avril Delgado, who spent a few weeks of her summer holiday with Rachel House on July 2019.

Deep in the narrow backstreets of a densely populated North Jakarta area lives Didi, a shy and very special 11-year-old boy. At first glance, he looks just like any other child, especially if you can coax a smile from him.

However, look a little closer and you will notice how slight he is, so much smaller than other boys his age. Move a little closer and you will see a thin plastic tube running under his nose and behind his ears, connected to an oxygen tank at his side. Living with HIV since birth, and complicated by tuberculosis, Didi’s lungs are damaged to the point where he now struggles to breathe without the assistance of this essential external oxygen.

Step inside his humble home and you will see the walls are ringed with four-foot-tall oxygen tanks, some full and some empty, but all there to ensure Didi has enough oxygen to breathe. You’ll also notice the shelf of medications in his home, to keep the HIV at bay and manage the other serious complications he now lives with – including pulmonary hypertension and cardiovascular disease.

Didi shares this small house with his grandmother, his brother and his uncle. Both his parents have sadly passed away.

Despite all of these challenges, Didi is quick with a smile and generous with his laugh once he is comfortable with you. He loves to learn, play games like any other child his age.

“Nurse Rina, come take a look at my homework” 

As soon as I entered Didi’s home together with nurse Rina – one of Rachel House’s senior nurses – his little face lit up.

All excited, he cried out “Nurse Rina, nurse Rina, come take a look at my homework!” proudly showing us his maths homework, while joking about his learning progress. Because of his condition, he hasn’t been able to attend school. But he remains curious and keen to learn. So Nurse Rina has been giving him maths homework, as well as helping him learn to read and write.

Nurse Rina always makes sure that Didi is absolutely comfortable and relaxed before starting her thorough medical examination. While keeping a conversation going with Didi, she listens carefully to his breathing and checks his vital signs to get a full update on his condition. It has been an uphill struggle to get Didi to take his medications daily and in a disciplined manner. As the years progress, Didi has begun to question why he should continue to take his medication. The rebel in most teenagers is appearing in him. Sometimes it takes many long negotiations and extensive explanations on the importance of the medications to keep the illness at bay to convince Didi. Sometimes this works. Other times, it takes a serious infection to convince him. Sadly.

Didi’s grandmother and uncle work very hard to put enough food on the family table and to keep a roof over the family’s head. His grandmother has a small food stand in their neighborhood, where she sells Indonesian snacks. However, whenever serious infection develops and Didi requires 24-hour care or hospitalization, the stall would close and the family will rely on only the measly income from Didi’s uncle.

Didi’s dependence on oxygen, not covered by the Government Insurance scheme, adds to the mountains of worries for his grandmother. Thankfully Rachel House donors have stepped in to ensure Didi has enough oxygen to breathe without this bankrupting the family.

A Shoulder of Support

Beyond the physical symptoms, addressing the emotional, social and psychological issues of someone living with a serious or life-limiting illness is central to palliative care. On every visit, nurse Rina spends time with Didi and his grandmother, discussing the issues and the challenges they face. The stigma around HIV remains strong in Indonesia and Nurse Rina is one of the very few people who Didi’s grandmother can speak to openly about the challenges and frustrations she faces every day.

On my visit, I caught a glimpse of tears when grandma told Nurse Rina about Didi’s condition and the challenges faced by the entire family. It was only then I understood the significant emotional burden on patients’ families, and the extent of impact of Rachel House’s service on people’s lives. Nurse Rina’s visit, her attentiveness, and openness was a soothing salve not only for Didi but also for his grandmother, giving her an outlet to share her worries and her fears and help make her frustrations disappear even for a moment.

As we left the house, Didi was busy with his new homework given by Nurse Rina; comfortable, relaxed and breathing normally. Grandmother had a smile on her face, thankful for the shoulder of support. I was moved by what I witnessed.

*Name has been changed for privacy

Aug 19, 2019

A Sea of Smiles

On a beautifully sunny and clear day, 21 children aged between 2 – 15 and their families gathered with great anticipation outside Ocean Dream Samudra in Ancol, Jakarta’s largest waterpark. The children, all patients of Rachel House, have looked forward to this day with great anticipation; for many of them, it would be their first trip to the Ocean Dream and Seaworld. The trip was made possible through the kind and generous sponsorship of Kate, a volunteer who ran in Canberra Half Marathon to fundraise for Rachel House patients.

The day started with a group photo, with so much glee and fun as everyone – the patients, their families, the nurses and caregivers – all posed in the midst of bubbles of excitement everywhere. There was a sense of anticipation in the air as the patients were super excited to see what was coming. One little girl was running all over the place in excitement as she just couldn’t contain it! Luckily she did not have to wait too long as the Ocean Dream opens up before her eyes of wonder.

After the initial buzz of being at Ocean Dream, the group headed towards “Scorpion Pirates”, a live action show by the water with stunts and jet skis. The children were thoroughly fascinated by the jet ski stunts, especially when it went under water. One little boy was so mesmerized that he did not blink once, eyes glued to the show.

Following “Scorpion Pirates”, the children were treated to the sea lion/otter show and the dolphin show. Laughter was never far from the children’s lips as the seals leaped through hoops and the dolphins performed tricks in the air.

Then we went to a penguin show. During the penguin show, one of the children wanted to get close up to see the penguins that she sneaked over the barrier! She had the most amazing time of her life watching the penguins being fed, and diving in and out of the water. Rachel House’s nurse, Ribka, accompanied her throughout the show, taking her by the hand to see the fish display nearby, much to her delight.

The adventure at Ocean Dream was capped off with a group photo of all the children with the dolphins. For almost all the children, it was their first time seeing dolphins up close and touching them. A truly unforgettable experience they will cherish for a long time.

The last stop for the day was Seaworld, where the children were treated to a smorgasbord of colorful life in the sea, through a giant aquarium. Even though many were tired by then, having walked many hours, the sheer delight and wonder were still shining bright in their eyes. In the end, it was this – the ability to bring a little slice of fun and play in their challenging journeys – that give us all joy. For we may not be able to add days to their lives, but we definitely aim to add life to their every day. Our grateful thanks to all our donors and supporters for helping make this wonderful event possible.

 

 

 
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