These instructions are for Children’s Hospital of Philadelphia (CHOP) patients going home on intravenous (IV) nutrition, also known as parenteral nutrition (PN). Members of the Medical, Nursing, Inpatient Nutrition Support Service, Home PN Program and Intestinal Rehab Program (IRP) will help you and your family prepare to go home.

Important information before you go home:

• You will need to attend classes in the Family Learning Center (FLC) to help you learn to care for your child at home. This may include a central line class and a home PN class.   
• We strongly recommend that 2 caregivers learn how to give your child’s PN infusion.  
• You must practice central line skills with your bedside nurse using your child’s line after you   have completed your FLC central line class. You should schedule to both hook up and disconnect your child’s PN with your bedside nurse at least 3 times. After practicing, we ask that you spend at least 24 hours in the hospital caring for your child with staff supervision.
• PN solutions are made, delivered, and given differently at home. You will meet with members of the Home PN Program to review these differences and how care is coordinated at home. Nurses from the Home PN Program will meet with you to discuss your child’s specific home care needs related to central line care, PN regimen, and their home supplies. Samples of supplies may be provided.
• A home infusion company will be set up to provide your child’s infusion therapy and equipment. Learn more about instructions for storing and preparing PN.
• An infusion nurse will come to your house for additional education, pump teaching, and central line care. They may also draw labs at home when ordered by CHOP’s Home PN Team.

What to expect at home:

• A home infusion nurse will help you set up the PN the first 3 nights you are home.  They will also teach you how to use the infusion pump to administer PN. Call the CHOP PN team that follows your child if you need more infusion nurse visits for teaching.
• The home infusion nurse will visit weekly and as needed to change the central line dressing and needleless cap. They will draw labs when ordered by your home PN team.    
• Your home infusion nurse will only perform nursing tasks related to the central line or PN administration.   
• Home infusion nurses are not available to visit to hang or disconnect PN or give IV antibiotics when caregivers are unavailable.
• Some families may be set up with home private duty nurses (shift nurses) to support other aspects of their child’s care.  These nurses will be able to monitor your child and PN infusion, but most private duty nurses are not licensed to care for or assist with giving PN or central line care. Their role is to notify you of any line or infusion issues or fevers. They can help with other aspects of your child’s care like giving medicines, monitoring output and providing feeds.

Follow these instructions while your child is home on PN:

• Take your child’s temperature every day:
  • You must have a reliable thermometer at home. Ask to speak with your child’s Social Worker if you need assistance with this.
  • If the temperature is 100.4 F (38°C) or higher, call the healthcare team managing your child’s home PN as soon as possible.  
  • Do not give your child medicine to reduce a fever until you speak with your team, as this could delay evaluation for a bloodstream infection.
• Call the CHOP healthcare team if your child:
  • Has a temperature of 100.4 F (38°C) or higher
  • Looks puffy
  • Has dry mouth or eyes appear sunken
  • Has changes in stooling pattern, urine output, eating pattern, or vomiting
  • Has any central line issues:
    • Redness, swelling, drainage, tenderness, or other changes in appearance at the catheter site.
    • Inability to flush the central line easily and without feeling resistance.
    • Any other problems with the central line such as a break in the line.
• Call the home infusion company with any questions about the pump, supply or line problems. Staff from the home infusion company are available 24 hours a day, 7 days a week. Call if:
  • Your pump is not working properly.  
  • You see air bubbles in the PN tubing.
  • You have the following issues with the central line:
    • The dressing is wet, damp, soiled, or loose.
    • You are unable to flush the central line.
    • The needleless cap is leaking, damp, soiled, or depressed (center of cap tip is pushed down).
    • You have any supply issues.

If you have any questions about your child’s health, please contact your child’s healthcare provider. This document is intended only to provide general educational information and is not intended as medical advice or treatment. Please consult with your healthcare provider prior to use, as some of this information may need to be adapted for your child’s specific needs. It is the responsibility of your healthcare provider to advise you on the appropriate use of this information. If you/your child are not already a CHOP patient, this document does not create a doctor-patient relationship between you/your child and CHOP. CHOP is not responsible for any outcomes you/your child might experience from your use of this document. This document is provided "AS IS", WITHOUT WARRANTIES OR CONDITIONS OF ANY KIND, express or implied. If this document refers to any drugs or medical devices, it is the responsibility of your healthcare provider to check the FDA status prior to use. If this document includes references to drug dosing, please do not rely on this document. Your healthcare provider should check the package insert for each drug before use. Hyperlinks used within this document may not be translated into other languages.

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