Dylan Gardiner is just 22 months old and is facing his second Christmas in hospital. From Graiguenamanagh, Co Kilkenny, he was born 13 weeks premature at Waterford Regional Hospital. Weighing 650g (one pound, seven ounces), he was not expected to survive.
He had cardiac surgery soon after birth and, following severe breathing difficulties, had a tracheostomy tube inserted last November at Our Lady’s Hospital for Sick Children in Crumlin, Dublin. His tracheostomy tube needs to be changed regularly and if it gets blocked it needs to be suctioned – up to 100 times a day. He requires ventilation and 24-hour care.
His parents, Caroline and John-Joe, have been trained to provide the intensive care he requires and he has been ready to go home since March. They applied to Kilkenny-Carlow HSE local health office for a homecare package in March and were told there were no funds for one.
A homecare package would include the equipment he needs to survive as well as nursing hours at his home. Night-time nursing hours as well as some daytime nursing is necessary to give Caroline and John-Joe a break, to sleep and care for their other three children, aged six, four and three. Without a package Crumlin hospital will not discharge Dylan.
Hospital isolation
Dylan has contracted MRSA in hospital and so has been in isolation since before the summer. His room has one small window, a few toys, a cot which doubles as a play pen and one chair.
He is allowed into a separate play area on his own once a week. Caroline, who is on care leave from her job in financial services, spends Monday, Tuesday and Wednesday in Dublin, staying in a facility for parents of sick children.
“Then I go home on Thursday and I come up again on Friday evenings. John-Joe brings the other kids up at the weekend. I do feel guilty on Thursdays because he’s here on his own. The nurses here are great, but he’s on his own. And he’s my little boy,” she says smiling at Dylan.
Asked how she is coping, she says: “I don’t have time to think about me. We are so thankful to have Dylan, but the frustration is awful. He’s such a happy child. He’s fought so hard just to be here, it’s such an injustice that he’s left here in this prison.”
Premature birth
Three doors down the corridor, Josh Knowles (14 months) from Athy, Co Kildare is also ready to go home. He too had a tracheotomy, having also been born prematurely at 30 weeks and six days in the Coombe hospital.
His lungs collapsed and he has “floppy airways” which it is hoped will strengthen in time. Until then he needs ventilation and 24-hour care. He was ready for discharge in July and a homecare package was applied for from HSE Midlands.
On October 2nd his mother Rhona received a one-line email. “We continue to seek national funds to facilitate this application but without success to date.”
“Since then we’ve heard nothing,” says Rhona, who also leaves older children (aged eight and four) and a husband at home, to spend as much time as possible with her youngest. “Our lives are already turned upside down having a sick child. There’s no support, no information, no nothing.”
