Scott House has given us the freedom to be there at 4am and be together
We hope that in two weeks’ time we will be leaving Newcastle’s Freeman Hospital and heading home to North Lincolnshire with our 12 year old son, Isaac, and reuniting him with his two sisters.
We’ve been away from home for 11 weeks now and our lives have changed dramatically.
Isaac has always been very active. He’s part of a football team and is always riding his bike to the park to meet his friends. Everything was as it should be but then in November my husband, David, received a call from Isaac’s school to say he wasn’t feeling well. Over the weekend, he was vomiting every evening before bedtime then it became constant throughout the day. I called 111, sought their advice, contacted the GP and it was put down to a viral infection.
It wasn’t a viral infection at all.
When his condition didn’t improve, I pleaded with the GP to see Isaac. With the coronavirus restrictions, a doctor’s appointment is given in extreme circumstances. When he was assessed we were told they thought Isaac had appendicitis and it was best to transfer him to Sheffield Children’s Hospital where they’d be able to carry out the procedure to remove his appendix.
It wasn’t appendicitis.
Several scans showed there was an issue with Isaac’s heart. His left chamber wasn’t pumping, and his whole body was suffering. Sheffield Children’s Hospital got in contact with Leeds Children’s Hospital which has teams dedicated to children’s heart conditions and they advised to put him on heart medication straight away. The next day we found ourselves in Leeds being told that we needed to be put in touch with the heart transplant team at either Great Ormond Street Hospital or Newcastle’s Freeman Hospital. David and I were completely shocked. It was so unexpected.
Isaac was really poorly when we arrived at Newcastle and he was put on an ECMO machine which took over the work of his body to give his organs a chance to recover.
While we tried to absorb everything, a nurse on the intensive care unit told us that there was accommodation available for us. We were initially given a room in the hospital, but by the Monday we were introduced to The Sick Children’s Trust, which runs a place called Scott House where we have been staying ever since.
When we met Linsey, the House Manager, Isaac was undergoing an operation to be fitted with a ventricular assist device (VAD) which is an electric powered heart pump that works with the heart to improve blood flow. The operation took four hours, but it felt like nine.
We have no family or friends in Newcastle, which is around three hours away from our home. Scott House is so convenient and is somewhere we feel at home. It is just a short walk from Isaac’s side. When Isaac started to come round from his operation, David would wake up really early and go over at 4am to sit with him. When Isaac had an unsettled night, we could just walk out the door and be there so quickly. Scott House has given us the freedom to be there for Isaac whenever he needs us.
Not only has Scott House helped us to be close to our son, but it has taken some of the financial worries away as well. We have a mortgage and children at home. We feel really lucky that our employers have been understanding, but not everyone has that. The thought of having to pay for somewhere to stay and still pay bills at home and put food on the table for our girls, I just don’t know how we would’ve coped. It is really frightening to think about it. Maybe David would’ve had to stay at home while I went to Newcastle, but what if something happened? Being here on site when Isaac needed us, together so we could support each other, is exactly what we needed and what Scott House gives us.
Isaac is now one step closer to home and has moved into the self-contained flat at Scott House. We have been petrified about going home as there is a lot to learn about the VAD and what Isaac requires. Having Scott House has given David and I a chance to live with Isaac on our own, while doing the jobs of changing his dressings and giving him his medications. We have been able to absorb it all and take care of Isaac which has built our confidence up massively. The thought of leaving the ward and going straight home was frightening but seeing the hospital just across from Scott House is a huge comfort.
Isaac is doing really well and with each day he gets better. We are taking small steps to build his strength up. It has honestly been so much easier knowing that in the evening we can return to Scott House and just enjoy a meal together.
We hope the VAD will be a bridge to recovery and Isaac’s heart will do well with its support. He will remain on the heart transplant list and we will know over time what the future holds. For now though, we are focusing on getting everything ready at home for Isaac to come back and be together for the first time in months as a family.
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
As part of NHS Organ Donation Week 2023, we spoke with mum of eight Emma Austin from Shrewsbury, who we supported at our Scott House 'Home from Home' while her 13-year-old daughter Olivia underwent a heart transplant at Newcastle's Freeman Hospital. Emma describes the donor heart as “an incredible gift” that has provided Olivia with the chance of a normal life after a decade of struggle.
Organ Donation Week 2023: Following his daughter Beatrix's long awaited heart transplant in June, dad Terry Archbold brings us up to speed on her journey and his ongoing desire to raise awareness about child organ donation.
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