MEMBER STORY – SUPPORT THROUGH CHILDS ILLNESS
PSFS Support Member Through Child’s Illness
A nasal gastric feeding tube was used to feed him. When it was initially introduced he went blue, his oxygen levels dropped and he had difficulty breathing. Within three days of admittance the conclusion of all the medical teams caring for him was that he needed a tracheotomy as his tongue was blocking his airway and he was not clearing the carbon dioxide that was building up in his system. I remember seeing him after the operation in ICU and thinking it was the first time in his short life that he looked at peace, he could breathe properly without the stress of struggling. It was reassuring to know that the right decision had been made and made the obstacles to come easier to cope with. There is nothing more difficult than making major life changing decisions for someone else – the level of responsibility is immense and at times overwhelming.
HIGHS AND LOWS OF HOSPITAL LIFE
MORE BAD NEWS
Unfortunately the Consultant came back from theatre quite quickly and I was brought in for a meeting. My sons’ airway had collapsed as it had been weakened by the growths and subsequent operations. This meant that it would be at least another 6 – 12 months before they would try again to remove the tracheotomy, as he needed to be bigger. I was devastated.
I started working on getting the nursing supports I needed in place at home. Being a single parent meant that I did not have a second person trained up in my sons’ care. I was not prepared to take a risk with my sons’ life by taking him home alone – although that was what I wanted more than anything – if something went wrong as it had in the past, I knew that it would be down to me and an ambulance and that the risk was too great. I felt that I did not have the right to put him at risk and so I continued to work for supports.
During this time I was very worried about my sons development as a hospital setting is not geared for long term stay patients and many children suffer from future developmental delays and challenges after a long period of hospitalisation. Additionally, any of these children contract hospital infections and are not allowed in communal areas such as play rooms, other wards or the coffee shop. Instead of the child’s world expanding as it gets older, the reality was that my son’s world was shrinking and very restricted – at odds with the nature of children who are naturally curious and ‘in love with life’.
HOME AT LAST
Prior to my son’s birth, I was a ‘job sharer’, on a low income and money was tight but the cost of having a child in hospital is underestimated and unrecognised. The bills still rolled in. Even in a crisis the bills have to be paid. In a situation like this you acquire additional expenses over and above the ‘norm’. When my son was initially hospitalised, one of my work colleagues advised me to contact the Public Service Friendly Society, which I did. I do not know how I would have coped without their financial support. There is nothing worse than having a sick child but to have the situation compounded by financial stress is unbearable. The PSFS took some of this stress away and enabled me to concentrate on the well being of my family.
In life you never know what is around the corner, the good and the bad. Fortunately the PSFS is there if you need help in a crisis. I am very grateful for all their compassionate support throughout this time and would urge people to support this organisation, which works quietly behind the scenes to help people like you and me.