Hospital Assessment of Paediatric Intestinal Failure

Introduction

The aim of this leaflet is to provide you and your child with information about their admission to Addenbrooke’s hospital. The admission will assess your child’s potential need for long-term parenteral nutrition (PN). Your local team will have discussed this with you and have made a referral to our team. We will arrange a date for the admission with your team; this may change due to bed availability.

What is involved?

This admission will help clinicians decide how to best support your child’s nutritional needs. It will be necessary for the intestinal failure team at Addenbrooke’s to re-assess:

Enteral/dietary tolerance

This could include a change/increase/the introduction of diet or enteral (tube) feeds, even if this appears to have already been tried.

Monitoring of losses (fluid balance)

All of the fluids your child receives from drinks, enteral (tube) feeds, flushes +/- PN will be recorded. Losses, such as urine, losses from the stomach, stools and stoma fluids will also be measured. This will help us understand what your child is able to tolerate and what their fluid requirement is.

Investigations (tests)

Tests that have been taken previously will be reviewed by the team. Within this review, there may be other tests identified that would support your child’s assessment. This may include scans and blood tests.

Medications

New medications or a change in treatment dose may be advised to improve your child’s current condition.

The need for Parenteral Nutrition (PN)

The team will assess your child’s long term nutritional, electrolyte (salts) and fluid requirements. This may result in starting PN, or if already started, adjustments to the PN bag content and/or length of time your child is connected.

How long will my child stay for?

The length of the assessment is different for every child. You should expect your child to stay for a minimum of two weeks, but in some children, this can be significantly longer. The team will provide regular updates during the admission on your child’s progress.

What happens at the end of the assessment?

The intestinal failure team will make recommendations to best support your child’s nutritional needs. Your local team will be updated with the results of the assessment.

If the intestinal failure team have recommended home parenteral nutrition (HPN):

• You and your child may be transferred back to your local hospital whilst everything required for discharge is put in place.
• The discharge of any child on HPN is complex and will take the minimum of six to eight weeks depending on what the local team have already in place. The nutrition nursing team will discuss this with you in more detail.
• Multidisciplinary team meetings will be held to support the training and discharge process. You will be invited to attend these.
• A date for two weeks of training for HPN will be discussed and agreed. You and your child will then be transferred back to Addenbrooke’s for this training. Once the training is complete you will be discharged directly to home.

Who will we meet?

During your child’s stay you should expect to meet the intestinal failure team:

• consultant paediatric gastroenterologist
• specialist paediatric nutrition nursing team
• paediatric dietitian
• paediatric pharmacist

You may also meet other members of the paediatric gastroenterology team, such as a speech and language therapist, clinical psychologist, counsellor and the paediatric gastroenterology medical and nursing teams.

Contacts/further Information

Paediatric gastroenterology, hepatology and nutrition medical secretary: 01223 274827