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Today is “Sitting Up� day (as pain allows). The pain management team will visit you daily to review your child’s pain relief. It is important to express the level of pain your child is experiencing, both at rest, and with movement.

Your doctor will check your child’s progress and discuss a plan for the day. Your child may be allowed to transfer with a hoist to sit out of bed in a comfortable chair called a water chair. The occupational therapist and/or physiotherapist may assist the nursing staff with this transfer. Your child will be encouraged to sit out of bed for 30minutes, and then will be transferred back to bed. It is very normal that sitting out of bed will make them tired.

When sitting out of bed, or up in bed, the physiotherapist will complete chest physiotherapy, which is important to ensure your child’s lungs are functioning well. This will continue daily until they are back at their baseline. Your child could be allowed to trial fluids/ PEG feeds. It is normal that they may not feel hungry.  

Pain medication will continue via IVC until your child can tolerate feed/diet. They may be able to transition to pain medication that they can swallow or can be given via your PEG. 

The doctor will check your child’s progress, and if they were unable to sit out if bed yesterday, they will advise if this will be possible today. 

Your child will sit out of bed again today in the water chair, aiming for an increase in time from yesterday. 

Your child should be able to increase their intake of fluids and diet. They may be given medicine to help get their bowels moving. 

The occupational therapist will visit you to review your child’s wheelchair. The Occupational Therapist may measure your child’s back and modify the backrest/ laterals of the wheelchair depending on their positioning and potential growth. This will involve being hoisted into wheelchair. Your child child may not find their wheelchair as comfortable at first. They will be expected to sit out of bed for a longer period of time than the day prior.  

The occupational therapist will also begin teaching parents/caregivers how to use a hoist if you have never used one before. Depending how the child usually goes to the bathroom, the occupational therapist may bring some equipment to use on the ward to help with this, such as a commode. 

The physiotherapist will review your child to assist with transfers and ensure their lungs are functioning well. Continue to encourage the deep breathing exercises. 

Your child should be tolerating intake of fluids and diet, either orally or via your PEG.  The urinary catheter may be removed.  

Today is “planning day�. The pain management team and medical team will review your child and discuss their pain relief requirements for going home.

The occupational therapist will continue to visit to further adjust the wheelchair and start planning for them to go home. This may include beginning to organise any equipment that may be required at home, and discussing the safest way for you to transfer in and out of the car.   

Your child should be able to sit out of bed for an hour or two, several times in the day, in either their wheelchair or the water chair.

Today could be ‘discharge dayâ€� or planning for discharge should be well underway. 

Your child’s doctor, occupational therapist and physiotherapist will visit and assess your child’s progress and readiness for going home.  

The occupational therapist and physiotherapist will also contact your child’s community or NDIS therapists to provide handover so their regular allied health team can provided follow up.

Your child will increase their time sitting out of bed with the support of nursing staff or with parents/ caregivers.  For families that live rurally and expect to have a long drive home, it is important your child has developed the sitting tolerance for a long commute home. This is an additional consideration when deciding discharge date.

Your child may be able to shower, and the occupational therapist can organise a commode to help with this. After the shower, the operation site will be checked by nursing staff and a new dressing applied. 

The ward will organise your next appointment to see your child’s surgeon which will be three to four months after your child operation. You will need to visit your child’s local GP around ten to fourteen days following the operation for a wound check. If you have any concerns after you leave you can phone the hospital, on the number provided. Before you leave you will be provided with a letter for school with guidelines to assist with safe return to school. 

Your child may return to school when comfortable. They may start swimming after six weeks, provided the wound is well healed. They should NOT participate in any strenuous exercise until follow-up with the surgeon. Please ask any questions you may have before leaving the hospital.