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Patrick’s story

June 18, 2020

Up until a few weeks ago, seven-month-old Patrick had spent his entire life on Mountain Ward at Evelina Hospital. Recently he was referred to us for three weeks of step-down care to help his parents make the transition from hospital to caring for him at home. 

Patrick was born with a genetic condition, Tubb3 syndrome, which means he has many medical and caring needs. These include a tracheostomy and oxygen for the majority of the day to enable him to breathe, an ileostomy as his bowel doesn’t work correctly and a feeding tube as he’s unable to be fed by mouth.

The risk of COVID-19 meant accelerating plans for Patrick to finally go home from hospital, which was of course welcome news, but also overwhelming for his parents who were to become his main caregivers alongside a team of home carers; Patrick requires 24-hour supervision to ensure his ventilation is working and his tracheostomy stays in. So in order to help support Patrick’s parents and help take the pressure off the NHS, Patrick was referred to our Guildford hospice, Christopher’s to have three weeks of step-down care to help his parents feel confident using the medical equipment and administering his medication.

Whilst staying at our hospice, Patrick and his family enjoyed a day at the beach, lockdown style, with a fun outdoor sensory display.

Patrick’s mum said, “It’s so nice to be in an environment that is not medical. We’d never taken Patrick outside until he came to the hospice and now he is in the garden for much of the day. The staff have made us feel so welcome and at home here. We’ve made so many different memories in only one week since we arrived at Christopher’s. In the hospital, you have a security blanket around you…if we were going straight home we would feel overwhelmed. This opportunity has been brilliant to help us become independent with Patrick’s care and yet we know we have the support of staff if anything is needed. We’re beginning to make our own routines, so that when we get home the transition will be much easier. We’re working out all the equipment, including how to fit oxygen, feeding pump, ventilator, emergency tracheostomy box, suction machine and Patrick and a changing bag all in to a buggy, but the staff have helped us so much as they are all so experienced.”

We’re thrilled that Patrick is now at home with his family making even more new and wonderful memories.  Patrick’s mum said, “We’ve had a good first week at home, it is so lovely to be back and Patrick has been in great spirits. We are so grateful to the hospice, it was the perfect transition between hospital and home so thank you very much.”

Shooting Star Children’s Hospices is facing a very real and immediate crisis due to the COVID-19 pandemic. We are a lifeline to over 700 families, just like Patrick’s – help us be there for them now and into the future by donating.