Everyone was so friendly, despite all of us being worried for our little ones
We were heading to the urgent care centre in Stockton-on-Tees. Our three month old baby, Declan, wasn’t taking his bottle and his chest had started to look different, like it was sinking into his body. In all honestly, we thought we’d be told that he had a cold and a chest infection and sent home that night with anti-biotics. What he had wasn’t a chest infection though and we weren’t sent home. We didn’t make it home for eight weeks.
The nurse took one look at Declan when we arrived and sent us straight to A&E. Declan was taken straight into a room and the next time I saw him he was covered in wires and tubes. He was dehydrated so was given lots of fluid and his little chest was working really hard for every breath he took. He had become worse and it was shocking and upsetting to see. I waited outside with our daughter, Lillian, while Phil was told Declan needed to be transferred to a hospital that could help him to breathe and get better.
He could’ve been sent anywhere in the country, but he was transferred to Newcastle’s Royal Victoria Infirmary which is an hour’s drive from our home. Phil went with Declan to the hospital while I went back home with Lillian and waited for some news. It took around an hour for the doctors in Newcastle to stabilise Declan before Phil could see him on the Paediatric Intensive Care Unit (PICU).
If we had left it any longer Declan might not be with us today – which I can’t bear to think about. He was diagnosed with a combination of respiratory syncytial virus, (RSV) which is a lung condition, a tummy bug and MRSA. We were told that he would need to have antibiotics and his breathing would need to be done for him by a ventilator. He would be monitored closely and all we could do was wait.
Both of us wanted to be with Declan, and neither of us wanted to leave Lillian. She needed us just as much as Declan did. So, when we were told about The Sick Children’s Trust and its ‘Home from Home’ Crawford House, which was just a few minutes’ walk from Declan’s bedside, we were relieved.
The following morning, we were shown around Crawford House. It was nothing like we expected. It was big and spacious, with lots of bedrooms for families like us. There were bathrooms on each floor, a living room, kitchen and a playroom which we knew Lillian would fall in love with! We were closer than we ever thought we could be to Declan while he was in PICU.
For six days Declan remained on PICU and he managed to build up enough strength to be moved onto the ward. We decided then to give our room up at Crawford House as we knew how it felt to not be able to be with your child, plus one of us could sleep with him on the ward. For a week and a half, every day felt like it was a step closer to getting Declan home, but the worst was yet to come.
He stopped feeding again, but his belly bulged like he’d been feeding like usual. An X-ray showed that Declan’s bowel had perforated and that he needed emergency surgery. Phil was with Lillian at home, so I was all on my own dealing with this news. I remember feeling so scared as Declan was rushed into theatre. I didn’t see him for another six hours.
We were back at square one, wondering if our son would pull through and worrying about keeping our family together. Again, Crawford House came to our rescue and offered us a room. This time we were given a bigger room, so all of us could go back there and spend time together away from the hospital. Lillian really did make the most of the playroom and it made it feel like a real home as we watched her play while making tea.
By this stage, our hope of bringing Declan home for his first Christmas were dashed. Following the surgery to cut away the bit of bowel that had died because of the perforation, he had an abscess which required further surgery and a stoma to be fitted. Over the following weeks we learnt how to care for him and he got his strength back. Although it wasn’t the Christmas we imagined because we were staying at Crawford House we could stay late on Christmas Eve at Declan’s bedside without worrying about making the journey home. We could go to bed, and Lillian still felt the excitement of Father Christmas coming to visit. Although we weren’t home, he managed to find his way to her and she opened her presents before we went over to Declan, on Christmas morning, where she helped him open his.
Without The Sick Children’s Trust’s ‘Home From Home,’ I don’t know what we would have done. It would have been so tiring travel two hours a day, if not longer, depending on traffic so we appreciate that we had a room in Crawford House and can’t say thank you enough. We want to do some fundraising for the charity so that other families can be helped like we were. Crawford House was so close by that we never had to worry about not being with Declan. Everyone was so friendly, nothing was too much for the staff and the other families staying there were extra support, despite all of us being worried for our little ones.
Declan’s hospital journey isn’t over. Since leaving we’ve had a couple of issues with his stoma and he will need more of his bowel cutting away before the stoma is reversed. Despite this he’s happy and doesn’t let it get him down. We are very proud of him and this Christmas we will be making sure that it is extra special!
Christina Baxter and Phil Bulmer, Declan and Lillian’s parents
Max's family stayed with us four years ago when he was waiting eight months for a heart transplant. Since then they have inspired a huge change in the laws around organ donation in England. Read how they have been getting on since leaving Scott House
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