EVOLVING CARE TO MEET JANE’S CEREBRAL PALSY NEEDS
Jane is living with cerebral palsy, microcephaly and epilepsy due to grade-4 hypoxic ischemic encephalopathy.
She has severe laryngomalacia, a tracheostomy and requires overnight ventilation with oxygen. She has gastro-oesophageal reflux and has gastro jejeunostomy for all feeds and medication. Jane also has visual impairment, but can follow at times with eye movement. She is severely delayed in all areas of her development.
When Prestige Nursing & Care started working with Jane, the family dynamics were extremely testing as her parents were going through a divorce. Her mother was finding it hard to cope and her dad’s negative behaviour was impacting the family dynamics when he visited the home. As she found it hard to communicate it took time to understand her needs and wishes. She would scream for hours, which was very upsetting for everyone and her mum was distraught. The carers would take her out of the home for walks when her dad was around, as it was clearly impacting how Jane was feeling.
The team at Prestige organised a multi-disciplinary meeting with all healthcare professionals involved in Jane’s care, including her GP, district nurse, psychologist, her care manager and parents. It was agreed that Jane needed to integrate again with community and continue her education. Previous attempts to do this had been unsuccessful.
The carers looking after Jane also realised she would get distressed when there were too many noises around her. Her carers recognised when she was feeling uncomfortable and found she loved the song ‘High’ by The Lighthouse Family’ – she would smile and giggle when they played it. The song is played when she shows signs of distress and it usually calms her. Once trust had been established with Jane the care team were able to organise for Jane to spend positive time with her dad.
Jane is now able to attend a school with the right level of pastoral care to meet her needs, and enjoys interacting with other people her age. Prestige is currently preparing her for higher education as she approaches adulthood. Planning is key in transitioning a child into adult services, so the team at Prestige has been adopting a proactive approach to explaining what will happen and when to Jane, so she feels reassured. She can now communicate her understanding of what the carers are saying by smiling and blinking. The team are preparing Jane to be more independent by taking her to lots of different places, including restaurants with dad, day centers, local clubs and recently, to shopping malls. She is getting used to a range different people and now really enjoys meeting new people. The loud sounds which once affected her negatively do not bother her in the same way.