Hospice
Fundraising
Every parent knows the importance of their children getting a good night’s sleep and for mum, Debbie Finnie, making sure her active 8-year-old son has enough rest is no exception.
Jackson has an undiagnosed genetic condition and is on oxygen 24/7. He is fully TPN dependent, which means all his fluid and nutrients are delivered intravenously, and he has Autism Spectrum Disorder, Sensory Processing Disorder and Global Development Delay. Jackson is nonverbal and requires 24-hour care.
At night, Autonomic Dysautonomia, which can cause an irregular heart rate, and Sleep Apnoeas mean Jackson must be attached to a SATs monitor when sleeping. His TPN is also infused for 12 hours overnight and is delivered directly into a vein via a central line. This presents potential risks such as line breaks or serious infections.
She said: “Jackson is a caring, loving little boy with a very mischievous side. He likes being outdoors in the country and loves spending time with his big sister, Erin.”
Jackson is constantly on the move and so if he doesn’t get a good night’s sleep, it has a major impact, as Debbie explained:
“If Jackson has an unsettled night, it has a huge impact on the whole family the following day. Even though he may be yawning and tired, he will not stop and his behaviour becomes more challenging. He can start hitting himself or headbutting the floor. He becomes very unsteady and disorientated, and can walk into things.”
Because of his autism and sensory issues, Jackson can struggle with change and so Debbie maintains a rigid bedtime routine for her son. But it will be one that’s familiar to many families:
“He will watch In the Night Garden and have a story, or watch CBeebies stories, then he has a cuddle and falls asleep,” Mum described.
Once the family settle down, they have to closely monitor Jackson’s machines, which can be triggered at any time to indicate the youngster’s heart rate is getting too high or too low.
They must also be mindful of Jackson moving too much, which isn’t easy for a boy who thinks he’s Spiderman.
Debbie explained: “As crazy as it sounds, it’s harder to keep Jackson safe through the night than during the day. He has no awareness of safety and minimal communication, so if when he is awake, he tries to climb out of bed.
At home, Jackson has a specialist bed from the NHS and it is hugely reassuring to know that, when Jackson attends short breaks at St Oswald’s Hospice, he has the same style bed.
Jackson has been coming to St Oswald’s Hospice for just over a year and, at the start, Debbie admits she was very nervous.
She said: “I really struggled as he had never been away from me. His condition means he can get very poorly, very quickly without any warning so I was worried about how the staff would know if something was wrong.”
The team helped alleviate Debbie’s concerns by talking everything through with the family and taking time to get to know Jackson. They even did a separate tour with protective big sister, Erin, who could see the hospice’s facilities for herself and ask any questions she wanted.
Debbie, Erin and dad, Jim, also stayed in the family accommodation, which helped build further confidence that their beloved Jackson was being cared for to the highest standard.
Debbie reflected: “At the hospice, the focus is 100% on the children, even down to the bedding that they use. They personalise the rooms so that on each visit Jackson feels welcome and it really has become his second home.
“I have been in various hospitals, educational settings and social care settings, and St Oswald’s Hospice is the only place that, every time I have gone to, all the children I have seen or heard in the communal areas are happy and smiling and having fun with the staff.
“Being a parent carer is the hardest but most rewarding job in the world. The hospice has welcomed us with open arms and for that, we are very grateful.”
Knowing that Jackson’s bedtime routine is followed at the hospice, his room is homely, and he sleeps in the same style of bed, bring assurances to the Finnie family and Debbie reports that Jackson has grown in confidence over the past year.
While Jackson gets to enjoy the sensory room and the accessible play area during short breaks at the hospice, it gives time for the family to spend some quality time together and to catch up on their sleep – although Debbie admits she still sometimes turns Jackson’s monitors on at night.
“It’s just too quiet when they’re not on,” she said.
In addition, Jackson’s short breaks have enabled 14-year-old Erin to invite her friends over for sleepovers for the first time.
Debbie may not know what a silent night is – or even want one – but knowing that her son is safe and the whole family is happy is comfort enough for her.
The children and young adults who stay with us for short breaks all have very different needs when it comes to sleeping comfortably and safely. This is why we need to provide specialist beds and mattresses for them to sleep on. However, while essential, this equipment is very costly.
As a busy unit with a waiting list, the beds on our unit are in almost constant use, some since 2015 and are now nearing the end of their useful life. We urgently need to replace them with a more up to date model of the specialist bed that has all of the features needed to best support our young people to sleep well in our care.
This is why, with your help we hope to raise the £35,000 this autumn for our “Good Night’s Sleep Appeal”, so our wish list will become a reality and our children and young adults can continue to get the best quality night’s sleep they need and deserve.
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