• A pain management team is dedicated to helping your child manage pain and will regularly visit them.
• Initially, they may receive continuous opioid medication like morphine through an IV, along with oral medications for comfort.
• They may also have a button to self-administer additional medication via the IV, it is programmed so your child cannot receive too much medicine. 
• As your child improves, the IV medication will be reduced until they are comfortable with oral medications like paracetamol and oxycodone.
• Other comfort measures include supporting their chest during coughing and providing distractions.
• Nurses will regularly assess your child's pain, but please inform them if you believe your child needs more comfort. They will strive to help your child feel better.
• Opioid (pain reliever) infusion factsheet
• Supporting your child during painful procedures factsheet

• If your child is having open heart surgery, they will have a cut (incision) either down the middle of their chest (sternotomy) or around the left side (thoracotomy). 
• The stitches holding these cuts together dissolve on their own. 
• The main incision will be covered with a dressing that will be taken off and cleaned before your child leaves the hospital or within seven days after the surgery. Your child will also have small cuts where drainage tubes were removed. These will have smaller dressings changed daily. 
• A stitch at these sites may be removed about five days after the drain is taken out.

• Children often need physiotherapy after chest surgery to prevent and reduce lung complications. Anaesthesia and surgery can cause increased lung secretions. 
• After surgery, children are less active, making it difficult to breathe deeply or cough effectively to clear these secretions.
• Physiotherapists use various techniques, tailored to the child's age, to help clear secretions. These activities are usually enjoyable for children, such as blowing bubbles!
• Starting physiotherapy early, even in the Pediatric Intensive Care Unit (PICU), is crucial to prevent complications, improve mobility, and shorten hospital stays. 
• Sometimes, coughing, deep breathing, or moving can be uncomfortable after chest surgery. That's why the physiotherapist will schedule sessions in advance to coincide with optimal pain relief and feeding times.

• It is  important for staff to be able monitor your child’s fluid balance. 
• After their surgery, your child will only be able to have small amounts to drink.  This is to prevent extra workload for the heart. 
• This amount will increase gradually over the days following surgery. The staff will tell you as these changes happen. 
• If your baby is breastfed you will be unable to do so for the first few days post operation. You will need to express milk which can be given to your baby in measured amounts through a bottle or  gastric tube.  
• Please keep the nurses up to date about how much fluid your child drinks as well as when you change a nappy/ they pass urine.  
• Do not allow your child to have any more than the measured amount as this may impact their recovery.  

• Your child may experience difficulties with feeding after surgery.
• Malnutrition and poor growth are  common in infants and children with cardiac disease due to:
  • tiring easily while feeding, leading to low total intake 
  • fluid restriction 
  • poor absorption 
  • increased energy expenditure 
  • early satiety (feeling of fullness) 
  • poor appetite 
  • frequent infections 
  • frequent use of antibiotics, affecting gut bacteria 
• Sometimes your baby will need help with feeding. They may need a nasogastric tube to allow them to get their daily volume without using too much energy. 
• They may also need a feeding tube if they have not developed the ability to suck for feeds. 
• Speech Pathologists and nursing staff are able to assist with helping your child learn this skill. This can be a very stressful experience for families, but it is quite normal following cardiac surgery.  
• Your baby may be sent home with a tube if feeding issues do not resolve in hospital. If so, you will be provided with education about tube feeds and how to manage them. 
• Appropriate community follow up will be organised to help your baby transition back to normal feeds. 

• Your doctor may suggest a dietitian consultation. Dietitians are available on the ward.
• For infants with cardiac disease, the dietitian recommends breastfeeding or expressed breast milk as the best option. If your child isn't growing well, calories can be added to breast milk.
• If breastfeeding isn't possible, the dietitian can arrange infant formula.
• If your child develops chylothorax (lymph fluid around the lungs), a special formula or diet will be recommended. This may need to continue after leaving the hospital.

Speech pathologists don’t just help with speaking. They are  involved in helping babies and children with feeding and swallowing problems.

• Babies with cardiac conditions may: 
  • tire during feeding 
  • have reduced strength of suck, although oral movements may be appropriate 
  • not wake easily for feeds 
  • be disinterested in eating, particularly if they have had long-term Nasogastric (NG) feeding 
  • have poor weight gain

A speech pathologist can assist by observing a baby's feeding, adjusting their feeding plan, equipment, or technique. They collaborate closely with the family to ensure enjoyable feeding experiences and help the baby reach their full feeding potential.