Myself and my wife, Karen, stayed at The Sick Children’s Trust’s Treetop House as my daughter Lily has a genetic condition called severe gastroparesis. Her condition causes parts of her body to shut down including her stomach and intestines, which don’t work well and mean she cannot consume food by mouth.
Lily was admitted to hospital on this occasion as she’d lost a lot of weight and had stopped tolerating her usual feeds which were passed directly into her intestine via a tube.
She needed a specialist treatment called Total Parental Nutrition (TPN); a method of feeding that bypasses the gastrointestinal tract and goes straight into the bloodstream which is something Sheffield Children’s Hospital needed to administer.
With TPN, fluids are passed through a central line directly into a vein to provide most of the nutrients Lily’s body needs. It needs to be administered carefully and Lily was in hospital for nearly eight weeks until we could be fully trained in giving her this type of feed.
We live 60 miles away which meant we would have had to travel for over an hour to reach the hospital. This would be even worse in the inevitably bad traffic and with work and having Lily’s brother at home, we would have really struggled without Treetop House. Staying here meant one of us could be with Lily at all times and it also meant we had plenty of time to get used to Lily’s new feeding routine. This was important as Lily couldn’t be discharged until her weight had improved and we were all confident in administering the TPN. Lily would also get really homesick at times and Treetop helped her too as it enabled one of us to always be there with her, whenever she needed us day or night.
Talking to other families also staying at Treetop was a massive support as we didn’t feel quite so alone; we could talk to other parents in the same position and this gave us a sense of normality. Having a private space away from the ward was also a massive help. The ward can be noisy, chaotic and upsetting at times and Treetop provided a quiet place, somewhere we could go to have a break and get the rest we needed. This meant we were fresh when we were spending time with Lily at her bedside. You also can’t underestimate the importance of a good night’s sleep when you are in a situation like this. Instead of sleeping on a chair or pull down bed on the ward, the facilities at Treetop meant we could have a proper night’s sleep. We could also cook meals for ourselves, not just saving us money but meaning we could eat healthily as the food on offer in the hospital or in convenience shops is limited.
Ann, the House Manager, was lovely and so helpful because she was there with anything we needed at any time – whether it be directions or a question, she would have the answer.
Lily is now home and still on TPN but is doing a lot better. I would like to say thank you to The Sick Children’s Trust and everyone who donates to the charity as I really don’t know where we would be without it, it was such a massive help at such a hard time.
Paul Tock, Lily’s dad
