Friday, 13 April 2012
We are so grateful to Guilford Street House
In January 2011, at just four weeks old our daughter Kacey was diagnosed with severe bronchiolitis and admitted to University Hospital in North Staffordshire.
After a few days the doctors realised that she wasn’t recovering as they had hoped so they decided to take a CT scan. This showed her windpipe was so narrow it was the width of the tip of a ball point pen and one of her arteries was wrapped around the windpipe. All of this was causing her to struggle with her breathing – they said it was a miracle Kacey survived the first few weeks of her life with this condition going undetected.
She was immediately transferred to Great Ormond Street Hospital (GOSH) in London for an operation to correct this, where my partner Victoria and I joined her.
This was a long way from our home in Stoke on Trent and when we arrived there we were so disorientated, the last thing we thought about was finding somewhere to stay close to the hospital. Thankfully a nurse on Kacey’s ward told us about The Sick Children’s Trust and luckily when we called they had a room free.
We stayed at The Sick Children’s Trust’s ‘Home from Home’ at Guilford Street House for 18 days from March 14th to April 1st 2011.
At first our younger son Logan, who is just two years old, stayed with Victoria’s mum until we got settled in London, but after a week she couldn’t afford to take the time off work so Victoria got the train back up to Stoke and picked him up and brought him back to be with us.
We had been apprehensive about bringing him down to London but all our fears soon subsided when we saw the house. It was just lovely, really warm and welcoming, a true ‘Home from Home’.
Logan loved being at the house and playing in the playroom with all the other children in the house, as this gave him a real sense of normality. We also took him to the park across the way and also London Zoo for the day to try and de-stress us all and get back that sense of family we had before all of this happened.
We were so grateful he could stay with us as I know the hospital can’t accommodate siblings. We all wanted to try and remain together as a family as the only other option would have been for one of us to remain at home in Stoke on Trent, which would have been the very last thing we wanted to do.
Staying at the house was brilliant. We didn’t realise how expensive London was and if we had had to stay in a hotel and eat out every night we would have been living on an extremely tight budget. Being able to cook in the kitchen and wash our clothes in the house and not have to take them to a laundrette really helped us out financially.
Also, as neither of us drive we would have had to use public transport to get between the hospital and Stoke on Trent without the charity’s support. With Guilford Street being just around the corner this was a great help as we could just walk from our room and not incur daily travel costs.
Tina, the house manager, was also very helpful in making us familiar with our new home and surrounding areas, as were other families who were staying in the house. We made friends with another family from Stoke and it helped ease the stress to talk to them and share our similar circumstances.
Kacey is doing really well now and we have been at home more than three months. On our last trip to GOSH we were told we can now be treated at our local hospital for follow up appointments, so fingers crossed we won’t be needing support from The Sick Children’s Trust in the future. However strange it seems, we will always have fond memories of our time at the house, and think back positively on all the support we received and friends we made during our stay.
By Carl Lewis, Kacey’s dad