I am a cup half full kinda girl and generally I am an optimist with a healthy dose of realist. I am always looking for inspiration from the people around me. That is why I chose to be a paediatrician – I find children the most inspirational of all people. Their curiosity, their innocence, their thirsty little brains soaking in all of the knowledge around them, their love of fun and laughter, their lack of cynicism and most of all, their honesty. A child is a beautiful thing to be around.
I am in the process of completing an online course on paediatric palliative care. This is not part of my curriculum. I chose to study this because lately, I am becoming more interested not only in acute illness in children but also in the chronic, life-limiting illnesses. I recently had a patient who has inspired me to think in this vain.
This 8 year old girl was born with a multitude of health problems and has physical, learning and social disabilities. She spends a lot of time in hospital with her single mum. Despite that, her favourite colour is yellow and she gets a lot of pleasure having her hair done. She is a right little chatterbox, honest as only a child can be and her smile can light up the darkest of rooms.
She came in for really complex surgery to sort out some of her abdominal plumbing. The operation took over 10 hours and recovery was slow but sure. Every day I would come in and she would report what was bothering her. There was only ever 1 complaint each day.
Day 1, she saw me and announced ‘my tube hurts’. Her nasogastric tube, a tube passed down her nose into her stomach to remove stomach secretions and help with bloating. I explained why it was there and why it had to stay in. She listened intently and nodded. 5 minutes later, she calls my name urgently and says ‘my tube hurts’.
Next day, her face was puffy and her tummy sore and she had vomited through the night – all expected from the surgery. As soon as I came to her, she said ‘I am sick’. The next day, it was ‘my mouth hurts’ as she was still nil by mouth (wasn’t allowed to eat or drink). Next, we had to get her sitting up so ‘I am tired’. Then started on sips – ‘I don’t like water’. Nearly 2 weeks later, her puffiness was gone, her tummy was no longer hurting, the vomiting was a distant memory and she was drinking plenty and eating some solids.
I knew she was better when her conversation became ‘why?’ and ‘where is…’ I came in one morning and her opening question was ‘can I go home today?’ I felt, well, sad! My little ray of sunshine was going to leave and I was not ready. My registrar, who was making the decisions, said ‘you can go tomorrow’ as she wasn’t quite 100% that morning. Internally, I heaved a sigh of relief because now I had 24 hours to prepare myself for her departure. Selfish. Because her poor mum was exhausted, sleeping on her little camp bed, having to make do with hospital showers and irregular meals. And my little patient was cooped up in a hospital ward, staring out the window at the beautiful summer sunshine and wishing she could be outside.
She was determined to go though and was on her best behaviour all day so we had to let her go that afternoon. Her last question for me was ‘you go home with me?’ Unfortunately not. She left me with a loom band after a hug that nearly toppled me. I will see you again I am sure my little ray of sunshine but even if I don’t, I will keep the essence of you in my heart and your loom band on my lanyard at work.