This is the story of John Paul (Graham), as told by his mum Kelly. I've not changed any of the words - it is just as Kelly sent it to us. This shows the remarkable spirit which people have, to keep going in the face of adversity, and that despite the anguish no doubt felt at the time, there is always hope.
My son John (Graham) was born in December 2002 at 00.40 hours. He weighed just 950 grams and his lungs were underdeveloped causing him to have Chronic Lung Disease. He started his life in an incubator with the help of a ventilator.
In the days that followed, John Paul needed a number of blood transfusions. As we sat by his incubator and watched him slowly getting stronger, we hoped and prayed that this was him on the mend. However, for every step forward he took two back and needed more intensive care. Each and every time this happened it broke our hearts.
After six long weeks I was finally able to give my wee boy a cuddle. How it felt to have my wee boy so close to me after all he had been through I could never explain. It melted my heart.
After three months he was finally taken off the ventilator and put onto another machine called C-PAP which meant that he was getting stronger. After months of being by his bedside every single day he was finally getting better. After a few weeks he was taken off C-PAP and put on Nasal Prongs to help him breathe. He was transferred to the Special Care Unit and we knew that this meant he was a step closer to him coming home. In May 2003, he was transferred to St Johns in Livingston and from there we could take him home during the day to return him at night until his health was improved enough. Then the end of July 2003 he was allowed home to stay or so we thought.....
John Paul had to attend follow up appointments at the Sick Kids Hospital in Edinburgh. Mid December 2003 he had to attend a sleep study. He had a cold. He got worse that night and the doctors were with him through to the early hours when he was transferred to the High Dependency Unit. Just as we thought he was doing great, he took a turn for the worst. The doctors put him back on a Ventilator. We were warned that his first winter would be the worst but never expected it to be like this. He was just as I had remembered him as a baby, hooked up to all those machines again. He spent his first birthday and his first Christmas in hospital.
Days went by and as we thought he was getting better, we got a call in the early hours late December 2003 saying that John Paul's condition had deteriorated. His dad and I were escorted immediately by the police to the hospital as the doctors didn't think he was going to make it. Our families followed us. When we arrived the consultant was waiting for us. She told us that John Paul was getting all the support that they could give him. He was being given 100% oxygen and the highest frequency Ventilator. The consultant told us there was a chance that he would not make the next hour, every minute was crucial but he made it through the night and continued to fight every night until weeks went past and he was on the mend again. He got transferred to Intensive Care and put back on C-PAP again then as he got better still was transferred to Ward 1. In a matter of a week of being in Ward 1 John Paul picked up an R.S.V Infection and was moved again to High Dependency. He was back to square one again! We waited by his bedside and he didn't even know we were there as the doctors sedated him to keep him stable. He got better again but having suffered so many setbacks we didn't think he was ever going to come home but he was over another hurdle and doing well.
Back in Ward 1 we had to learn how to put John Paul's C-PAP machine on so when the day came we would be prepared. Finally that day came. He was coming home! Finally after eighteen months of being in hospital he was able to come home for good. He was discharged at the end of March 2004. We thought this day would never come. John Paul was coming home with his C-PAP machine, a Saturation's Monitor and 6 different types of medicines which he had to take daily. Once home, a Physiotherapist came to see him to provide him with equipment to help his development. Being in hospital for all that time and not able to move around meant that his development as a baby was delayed. He didn't learn to walk until he was nearly 2 years old. A lot of help and support was needed for various things because of what he had been through.
In February 2005 John Paul underwent an operation to close a valve in his heart. Since that operation we started to notice a big change in him. He just got better at walking, talking and doing normal little boy things. He is now 3 years old and going strong. This will be his third Christmas at home this year. Every year is a worry as we don't know what to expect. John Paul still requires home oxygen at night.
He is a little terror now. You just wouldn't believe he is the same little boy. He is starting nursery in April 2006.
I have written our story for other parents and families who are going through the same as we did.
This is just to let them know that they are not alone and a lot of people go through the same thing every day.
There is a light at the end of the tunnel so hold on in there, you will get through it, it might be long and hard but you will get there in the end.
Thank you to all the doctors and nurses who looked after John Paul. You are real life Angels.
Lots of Love
Kelly (Graham)
xxx
