PANS - Pediatric Advanced Nutrition Support

Part of Strong Memorial Hospital

Pediatric Advanced Nutrition Support (PANS) is a program developed at Golisano Children’s Hospital that specializes in the treatment of children with feeding difficulty and complex nutritional needs.

Our Team of Experts

• Physicians trained in surgery, gastroenterology and nutrition
• Registered Dieticians
• Nurse Practitioners
• Nurses
• Social Worker

Conditions We Treat

• Feeding Tube Dependency
• Failure to Thrive
• Short Bowel Syndrome
• Gastroschisis
• Omphalocele
• Hirschsprung’s disease
• Chronic intestinal pseudo-obstruction

Resources

• American Society for Parenteral and Enteral Nutrition (ASPEN). This is an interdisciplinary organization devoted to advancing education, care and research in the field of nutrition support therapies, including parenteral and enteral nutrition.
• The Oley Foundation - The Oley Foundation is a national, independent, non-profit organization that strives to enrich the lives of those living with home intravenous nutrition, parenteral, and tube feeding, enteral, through education, advocacy, and networking.
• The American Speech-Language-Hearing Association (ASHA) - This is the national professional, scientific, and credentialing association for 211,000 members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology support personnel; and students.
• NASPGHAN - North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
• GI Kids - Help and Hope for Children with Digestive Disorders

Living With a Central Line

Living With a Central Line

Here are some important tips about caring for a Central Venous Catheter (CVC) or “Line” at home.

Hygiene

It is important to keep your child’s skin, hair, and mouth clean. Bacteria from these areas can cause an infection in their central line. It is very important for your child to bathe every day and more often as needed for soiled clothing or contact with bodily fluids. If your child’s central line dressing becomes wet and/or lifts up after bathing, it needs to be changed immediately.

Your child should wash with Chlorhexidine (Hibiclens) soap daily (unless he or she has an allergy to chlorhexidine). This special soap kills bacteria during the bath and for up to 24 hours after bathing. If your child has any rashes or open areas in their skin- avoid these areas when bathing with Chlorhexidine.

To bathe with Chlorhexidine when your child’s central line is located in his/her upper chest:

1. Curl central line end up and cover central line dressing/line with Press N’ Seal and tape a “window” around Press N’ Seal. This DOES NOT mean that your child can soak in water, it will ONLY protect against splashing.
2. Bathing your child with a central line at home can be done in a few different ways depending on your child’s age and ability to follow directions:
   • Babies can be washed in an infant tub filled with a small amount of water, be careful to keep water level low enough that line is not touching/soaking in water.
   • Toddlers that are able to sit independently and young children can bathe in a bathtub filled with water to waist level or just below waist level. Be sure to always stay within arm’s reach of your child to prevent them from submerging line. When pouring water over your child be careful to avoid pouring water over the line.
   • If your child is able to stand and follow directions, bathing can be done in the shower, facing away from the water and tilting head back to wash hair.
3. Wash hair first with regular shampoo and rinse well to remove any residue from hair/body (Rinse body well with water from neck down (this can be done in a shower facing away from the water, in a bathtub filled with water to waist level, or with a wet washcloth out of the bathtub).
4. Apply chlorhexidine soap directly onto your child’s skin or onto a wet washcloth and wash their body gently. Do NOT use Chlorhexidine soap on your child’s face. If showering, ensure your child is standing away from the water to wash.
5. Rinse thoroughly with warm water.
6. Do not use regular soap after using chlorhexidine soap.
7. Dry skin well with a towel.
8. If lotions are needed, use only those compatible with chlorhexidine.
9. Put on clean clothes after bathing.
10. This is not an "all inclusive" list. See manufacturer's website for further details.

Oral Care

Your child’s teeth should be brushed twice a day or after every meal if your child eats by mouth. Teeth should be brushed with a soft toothbrush and toothpaste for two minutes. Flossing should be done daily. Mouth should be rinsed with water after brushing and flossing if your child is able to follow directions to spit. If your child has difficulty with spitting and/or swallowing, teeth can be brushed with a very small amount of water and a small amount of fluoride-free toddler toothpaste. Baby’s mouths/gums can be cleaned with a gauze moistened with water.

Activity

It is important to be careful with your child’s central line and to always make sure that the line is not pulled during activity. Gus Gear central line wrap should be used at all times to help secure central line dressing and tubing. Be mindful when you are picking a child up out of a crib, swing, high chair etc. that you know where their tubing is and that the line will not be pulled during lifting. We want your child to be as active as they would like! If you have any questions about how to support this at home, please contact our office and we can work with you to help with any concerns you have.

Environment

Because your child’s central line places him/her at an increased risk for infection, it is important to keep his/her home safe.

• Your child’s sheets and any other bedding should be washed with hot water every week or more frequently if they become dirty. Limit stuffed toys unless these can be washed.
• Clothing should be kept clean and dry and changed daily or as needed if they become dirty.
• Clutter should be cleared from floors to prevent catching and pulling on central line, or tripping and falling.
• Your child’s toys should be cleaned regularly, especially those that are placed in your child’s mouth.
• Pets should be monitored carefully to avoid tangling or pulling on central line tubing.
• Environment during central line care:
  • Central line care should not take place in a bathroom.
  • Fans/air conditioner should be turned off and windows and doors should be closed.
  • To the best of your ability, limit distractions and use the assistance of another adult.
  • Use your designated supplies and surface for all central line care.
  • Pets (and ideally anyone not needed during the central line care) should not be in the room during line care.

What To Do If…

Troubleshooting Central Line Issues

My Child’s Central Line Won’t Flush

**DO NOT flush if you meet resistance. This can cause the line to break or a blood clot to move into your child’s body**

1. Check to see if clamp is closed or tubing is twisted or kinked.
2. If there are no kinks and clamp is not closed, change the needleless access device (cap/clave) and try again.
3. Call your child’s doctor if you are still not able to flush the line EASILY.

My Child’s Central Line Pulls Out (partially or completely)

1. Apply pressure with a sterile gauze/clean material to the site to stop bleeding.
2. Have your child sit upright.
3. Call your doctor/ go to the emergency room immediately.
4. Place any part of your child’s central line that has come out in a container and bring it to the hospital with you.

Fluid is Leaking from my Child’s Central Line

Leaking from the line itself

1. Clamp the catheter (line) between your child and the site of the leak.
2. Cover the break with a sterile gauze and tape.
3. Call the doctor/ go to the emergency room immediately.
    

Leaking from my child’s skin around where the central line goes into his/her body

1. Stop using the central line.
2. Change your child’s central line dressing if it is wet underneath.
3. Call the doctor/go to the emergency room.

When to Call the Doctor: (Go to nearest ED after hours)

• Any fever over 100.5 F
• Pus-like drainage from central line site
• Redness, swelling, warmth, discomfort around the site
• Any concern that the line has been pulled/removed
• Any concern that the line has been broken
• If you are not able to flush the line easily