Preparation is the key to a successful hospital stay

When your son faces challenges in dealing with everyday life, facing a heart procedure is tough

At a parents’ meeting in my son’s school last January, there was a discussion about the need to include programmes to help students who need to have bloods taken in hospital. This was not a parents’ meeting at a mainstream school, but at Abacas, one of 12 special schools for autism in the State and my autistic son, Askar (then 10), was due to have his first heart procedure in the following months.

It was hard to conceive of how a child who has difficulty getting his hair cut, coping with noisy environments, dental treatment or having bloods taken, was going to cope with a hospital stay and a significant procedure. We needed all the help and advice we could find, as well as a plan to ensure that when the date arrived, everything would be in place, so that staff could concentrate on the procedure, rather than on Askar’s disability.

We were lucky to have specialist counsellor with Heart Children Ireland, Dr Deirdre O’Neill. While O’Neill initially helped with our emotional preparedness, we were able to benefit from her former experience as psychologist with the cardiac department in Crumlin. Her knowledge of the hospital structure led to contacts and meetings with psychologist Catherine Matthews, clinical nurse manager at the cardiac department Fionnuala Gardiner and Deirdre Corcoran, who was responsible for booking surgeries into theatre.

Juliet Quinlivan, the clinical director at Askar’s school, prepared a short report on Askar and unfamiliar environments, which became a blueprint for our discussions about the potential challenges of his stay.

This included very practical steps to be taken to prevent Askar’s access to water on the morning of the procedure (he can drink litres in jig time from any available sink), to his difficulties around high-pitched noises (babies and toddlers’ cries in particular) and how to secure the bandage on Askar’s groin post-op, as he would be certain to try to remove it.

Psychologist Catherine Matthews drew up a report on all of the challenges discussed at this meeting along with recommended actions and circulated it to key professionals who would be involved.

Familiarisation programme

While in Crumlin, I got to visit the type of room Askar would stay in, saw the theatre where the procedure would take place and got to take away cannulas (Freddies), blood pressure cuffs and other hospital equipment, so that Askar’s school could set up a familiarisation programme for him in the weeks preceding the operation.

Askar’s own understanding of what was going to happen to him was limited to understanding what hospitals are and that various investigations would take place (understood very simply as “checking his tummy” and “pinches on his arm”), but he didn’t have any concept of staying there overnight or of having a procedure.