26 April 2023
Jake’s Journey
Jake’s Story
Before birth Jake was given a 2% chance of survival. He was born with a major exomphalos, meaning most of his vital organs were outside his body. There was to be no resuscitation. There was to be no medical inventions. This family had mentally planned a funeral for their baby boy. But Jake came out breathing and he continued to breathe!
Jake spent his first 16 months in Temple Street Hospital, defying odds. A whole new plan had to be made. For the first six months, Jake was intubated and sedated in a coma in ICU. He was in a hospital environment where he didn't see the sky outside until he was ten months. Jenny and Alex, Jake’s Mom and Dad would spend alternative weeks in the hospital, so one of them could be at home with their daughter, Sadie. Every Friday they would switch, so that each child had one parent and Sadie could live a relatively normal life; she went to school, she went to her swimming lessons and got into every sport.
Coming home
In March 2020, Jake came home on a weekend trial. He came home with a Broviac, NG (Nasogastric Tube) and BiPAP. Then Covid hit, and Jake was asked to stay at home. This was not the plan! But everything fell into place, Resilience Healthcare were awarded the care package.
Resilience nurses offered Jake and his family the ability to function as a family unit. Initially Jake received both day and night time supports. This offered the family consistency. The nurses knew Jake and his habits inside out. If his heart rate went up by five beats, they would know that he was brewing something or if he turned funny, they would know that he had trapped air. This knowledge was invaluable. Jake has thrived. Kerry General hospital have never seen him because the family have been able to do everything themselves at home with the help of Resilience Healthcare nursing support.
The future
Jake is now four, in preschool and loving it. He is hoping to start primary school next year. His social skills are improving, his motor skills are improving, and his verbal communication is improving. He will be weaned off the BiPAP soon, and with the possibly operating in a year or two and this will all be a distant memory for him. If all this works, Jake and his family won't need the nighttime support anymore, and they will be moving on from Resilience Healthcare supports to live normal lives!
Jenny on Jake's Journey
I think the sooner you can get them home into a home environment and give the family the support they need to be able to maintain themselves but also to be able to maintain them looking after their kids is huge, because then you will have a fantastic outcome.
Like in a few years this will be a blip, Jake won't remember any of it hopefully. He will live a completely normal life, that's what we foresee and that’s what the teams are foreseeing.
We’ve had some absolutely fantastic Resilience nurses along the way. When it works it works. What they've been able to do… we wouldn't have been able to do this. We wouldn't be a family unit, it's unsustainable. Jake came from a hospital environment with full medical teams 24/7 and then you come home. With the help of Resilience, the stress has been off. I can function. I can sleep. I can focus on everything else, and I can put my heart and soul into Jake and Sadie. From where he came from coming from having little chances of survival to going to school next year. Each time we go up to Temple Street Hospital, they're crossing another thing off - his pulmonary hypertension is gone, his pulmonary hyperphagia is gone. This is gone. This will be gone. We're nearly there, this time next year who knows! He's making up for lost time he's a character whoever he meets he touches because he's just a happy kid so yeah we're lucky we're one of the lucky families.
Nurse Manager, Lisa Harrington, sums up the importance of home nursing support
I've seen first-hand the invaluable impact our home nursing supports have on families. It's not just about providing medical care, but also about empowering our service users and their families with the knowledge and skills to manage their health and well-being in the comfort of their own home.
At Resilience Healthcare we focus on personal and individualised care. With the right plan in place these families can achieve a life they once couldn’t have imagined. Home nursing support is truly at the heart of compassionate and person-centred care.
