Parents of children with congenital heart disease

Moving to the ward

As children recover from their operation, they progress from the paediatric intensive care unit to the high dependency unit of the ward and then to the cardiac ward. In paediatric intensive care, children have one to one, twenty-four hour specialist nursing care. On the ward, nurses care for more than one child.

Some parents found leaving the intensive care environment stressful because they were worried that their child might not get the attention they needed. One couple explain that although they were relieved that their child was getting better, they felt less secure about leaving him for short spells when he was on the ward.

Another describes what it was like on the children's ward and recall that they lost all sense of normality when they stayed there with their son for eight days. One mother commented that that they let her use the phone on the ward to update her husband about their baby's progress while he was at home looking after their other child. Another couple mentioned that the days could be quite long and it was useful to take something to occupy themselves while their child was sleeping.

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When children move from intensive care to the high dependency ward, parents become more involved in their child's care. Some of the drains and drips had been removed and parents said they could feed and hold their child. One couple recalled that they had expected their baby to look better when he was moved to the ward and were distressed to find he looked worse because he was being weaned off morphine. Another mother said her son was very spaced out while he was on morphine.

During surgery, 'pacing wires' are attached to the heart so that should a child's regular heartbeat change after surgery it can be returned to normal. After about five days, pacing wires are normally removed. One couple explain that they asked for their son to be sedated when the pacing wires were removed. Another said the consultant pulled their son's wires out while he was on the ward, which had been fine. One mother felt that her two and a half year old daughter was upset when the wires were removed because she was getting tired of having things done to her.

Children tend to recover very quickly after heart surgery. Several parents had been amazed how fast their child had recovered. One mother remembered that the morning after her son's open heart surgery he was sitting up in bed eating toast, was moved to the ward later that day and the following day he was in the playroom. One couple could take their baby out for a walk in his pushchair.

Sometimes post operative complications can delay recovery. Parents had been distressed by setbacks and a return to intensive care when they thought their child was progressing.

Several parents mentioned that for a time after the operation their child was said to have fluid around the heart. One mother said that her son needed to stay in hospital an extra day and return for a follow up appointment after a few days because the fluid was not clearing as fast as it should. Another explained that her daughter had a stomach bleed caused by the painkillers she was on, and that this had delayed her discharge from hospital by a couple of days.

Last reviewed December 2014.

 

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