13 year old Hope loves stories, swimming, the wind in her hair and the sun on her face. When she was in considerable pain after her surgery for scoliosis, her family were desperate for help. This is Hope’s story.
Hope has a rare metabolic disorder called Pyruvate Dehydrogenase Complex Deficiency (PDCD) which has caused significant delay in all areas of Hope’s development, including motor skills, speech and language, and cognitive skills. Hope is also registered blind.
When Hope was in considerable pain after her surgery for scoliosis, her family were desperate for help. That help came in a stay at Naomi House & Jacksplace, where our team of expert doctors and nurses were quickly able to assess and manage her pain.
Hope’s mum, Caroline, told us about their experience:
We’ve been coming to Naomi House for respite for a few years now, and I won’t be the first to say that we haven’t found coming to a hospice easy and initially we were very reluctant. I like looking after Hope myself and I like things done in a certain way. I’m not very good at handing over her care and coming to Naomi House can be challenging for me. However, recently, Hope had to have some surgery for her scoliosis and the support from Naomi House & Jacksplace has been fantastic.
Hope was in hospital for eight days and we were so relieved to get home. Hope had been put on a cocktail of medicines, mainly for pain relief, but it didn’t feel like we were managing her pain very well, she seemed to be coming in and out of cycles of really bad pain and shaking violently. It was so difficult to make her comfortable and happy, which was so unlike Hope, as we can usually read her a story or sing her a song and she perks up. But even that didn’t work and it felt like Hope didn’t have a good quality of life, or in fact that any of us did. Hope wasn’t coping and we were struggling with seeing her in so much pain and distress.
We were so relieved when we were able to go to Naomi House & Jacksplace. The team know Hope very well and as soon as we got there they knew straight away that she wasn’t herself. I explained how the pain was coming in cycles and to my great relief Dr Tim, one of the doctors at Naomi House & Jacksplace, came and assessed her and quickly adjusted her combination of medicines to increase the doses of pain relief.
I could have cried. Within two hours of Hope being in Naomi House & Jacksplace, she was in a better place than when we came in and then over the next couple of days, the pain was under control.
Dr Tim Warlow, Specialist Paediatric Palliative Care Consultant at Naomi House & Jacksplace, said:
The whole environment at Naomi House & Jacksplace is designed to enable children and young adults to feel comfortable and supported, providing respite while addressing pain, distress or a range of other symptoms. The combination of this therapeutic environment of support, activities and interaction meant that Hope settled quickly once she arrived at the hospice. I was able to assess Hope’s pain and adjust her medications accordingly to ensure her comfort, reviewing each day to adjust the regimen as needed. Experienced nurses were able to monitor Hope’s pain scores and pain behaviours, which in a child like Hope can be difficult to interpret.
Our stay at Naomi House & Jacksplace felt quite different for us this time. We usually come to the hospice for respite. However, because of the pain Hope was in, her pain levels were constantly being monitored by a nurse. We needed specialist care and that’s what we got, I saw the magic that the team at Naomi House & Jacksplace deliver.
Something really wonderful happened while we were staying in hospital. Hope has a significant ongoing physiotherapy programme and when she visits Naomi House & Jacksplace, she gets a lot of support from the physiotherapists there. The physios work on rotation between the hospitals and while Hope was in hospital for her surgery, the physiotherapist there knew Hope well from the time she had spent at Naomi House. When she saw Hope, she knew exactly what Hope was capable of. She also knew the team at Naomi House and they were able to communicate backwards and forwards about what was best for Hope. When she arrived at Naomi House, Hope then had two physiotherapists working with her every day. As well as her pain coming under control, she was improving physically.
Being able to gain control of Hope’s pain meant she was able to move more freely, engage better with our physiotherapy team, and recover more quickly and to a higher level from extremely complex spinal surgery.
After five days we were ready to go home again. It felt like we were on a different trajectory to where we were before. We had come into Naomi House really broken, we weren’t in a good place at all. By the time we left, we felt ready to go home. Dr Tim prescribed pain medicines and gave us a very detailed plan of when to administer them and how to wean Hope off them. He also wrote to our GP to make sure we had those medicines once we got home. It was seamless.
Hope is on a ketogenic diet, which is a low carbohydrate high fat and controlled protein diet, and until the pandemic I used to prepare all of her food even though the catering team had offered to do this. Due to the necessary strict guidelines during the pandemic, I had to hand over all of Hope’s food preparation to the catering team. This was very hard for me as no one else had prepared her food, but we talked everything through and I knew I could trust them. I now have the choice to prepare Hope’s food when I visit, but I don’t feel I need to.
The catering team are fantastic. They’ve got a record of the food that Hope can eat and they make all of her meals now. It takes a lot of trust, but it means I get extra rest.
A typical day with Hope will include giving her medicines, feeds, physio and different activities. When I get up in the morning, I give Hope some water, then remove her SATS monitor. I will usually have to get up multiple times in the night when the monitor alarm goes off. The monitor measures the oxygen levels in Hope’s blood. I give her breakfast, get her washed and dressed and ready for the day ahead. I don’t sit down and have breakfast like other people do, I look after Hope 24 hours a day.
When we stay at Naomi House, it means I can have a full night’s sleep and when I get up in the morning, I can have a cup of coffee and a piece of toast all by myself before I’ve had to do anything.
Coming to Naomi House & Jacksplace after Hope’s surgery made a massive difference to Hope and to our family. If we hadn’t been able to go to Naomi House, we would have ended up back in hospital. When Hope was in so much discomfort and pain, Naomi House was a light at the end of the tunnel.