MEMBER STORY – SUPPORT THROUGH CHILDS ILLNESS

In April 2003 my son was born with a cleft palate. He was kept in the baby unit for a week and then discharged home. From the beginning it was obvious that all was not right. His breathing was extremely laboured. If you placed him on his back to change his nappy his lips went blue, if he was seated in the chair seat his head had to be propped forward. He had an apni monitor in case he stopped breathing. After a horrendous eight weeks at home his chest caved in, a classic sign of chronic breathing difficulties and he was finally admitted to hospital for ‘failure to thrive’.

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.

Throughout the next two months I underwent an intense period of training to care for my son with a view to discharge. Whilst the tracheotomy had saved my sons life they come with risks and a high level of supervision and care is required to ensure that the tube is unblocked at all times. I got a phone call one evening to say that my son had stopped breathing but that he had been resuscitated and he was okay. Five days later he went blue and became dependant on oxygen. He was taken to theatre where the medical team found a blockage at the top of the tracheotomy, which was cutting off his air supply. There was no theatre available that day and so he was put on 24 hour nursing watch. It was a long night. He was taken down to theatre the following day and the growth was removed. This was to be a pattern and in the end I think he had five growths removed each getting smaller each time they appeared.

Finally the day arrived when my son was taken to theatre with a view to removing the tracheotomy. It is a day that any parent with a child with a tracheotomy dreams of. Even the simplest of things like taking him for a walk around the hospital required that you bring an oxygen cylinder, a suction machine and a bag of medical supplies in case of an emergency. To be free of the responsibility, fear and stress of a tracheotomy is like winning the lotto and signifies the beginning of a ‘normal’ life.

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’.

I finally did get my son home with a great team of nurses who understood how important it was for my son, my eldest son and for me to get out of the hospital environment and home to some level of ‘normality’. The tracheotomy was removed last year and my son is doing well. He recently celebrated his 3rd birthday and whilst he is still under the care of various medical teams, as time goes by without crises I can believe that he is out of the woods.

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.