“We don’t want to go into hospital day after day,” Denise Guihan told the Leader at her home in Elton Court, Leixlip, last Saturday morning.
While the weekly home package being paid by the HSE will seem high to many - €9,000 a week - the cost of a day of care at Temple Street Hospital is €2,500.
When Shay and Finn were born, their condition came as a surprise. There had been no indication of any kind of their current condition.
Denise and Dermot feel that every day the boys are not at home is a “day robbed.” While Shay and Finn are very ill, they are also very normal little boys and play with toys, she said.
When the the home car package was first provided by outside agencies, they found, in some instances, that people arrived who were not trained in the use of tracheostomy care and equipment, which is a crucial part of the care of the boys.
They also learned that the going rate for Sunday care provided in this case was €500 a day.
It should be said also that both parents have been trained themselves, but they cannot look after the boys on a 24/7 basis.
They are very aware of the potential short life of their sons.
She and Dermot reject any suggestion that they are being “difficult.” They do not want to go into hospital every day. They know they will either be physically wrecked or, in the event they do not go under those circumstances, guilty.
Speaking of the care provided during four months they were at home, Denise said 37 different nurses came through their Elton Court home.
At the moment, they are tired, to say the least, not just worrying about their children but dealing with the HSE and the plethora of agencies. “We are exhausted,” she said.
The HSE did not respond to queries by press time.