Everyday tips

• As the tubing can easily wrap around your child’s neck or arm, keep the tubing underneath the child’s clothing.
• If your child is wearing one-piece pajamas or a “onesie”, place the tubing inside the garment and pull it out through the bottom or the opening at the feet; this will prevent the tubing from wrapping around your baby’s neck.
• If your child is older, keep the tubing underneath clothing; in young children, run the tubing underneath a snug-fitting undershirt so that the child is less likely to touch the tubing.

• Avoid getting the dressing wet because it may fall off. Bathing in shallow water is preferable to a shower.
• To protect the dressing from splashing, cover it with waterproof plastic wrap (eg, saran-wrap™) attached with tape so that the dressing stays dry.
• Never put the catheter or dressing in the bath water, even if it has been covered in plastic.
• Swimming is not permitted if your child has a peripherally inserted central catheter (“PICC line”), a central tunnel catheter (eg, Broviac®) or an implantable chamber catheter with the needle in place; otherwise, the dressing may become wet and peel off. If the catheter is not protected, it may come out or become infected.
• Your child can bathe and swim if he / she has an implantable chamber catheter (Port-a-Cath®) and the needle is not in place.

• It is recommended to leave parenteral nutrition bag with the pump in an opaque storage bag or backpack to protect it from light. The parenteral nutrition bag must never be more than 30 cm above or below the level of the pump.
• The storage bag or backpack may be placed upright in the corner of the bed; check with your child’s healthcare team to find the best location.
• If available, a hospital style intravenous pole can be used to hang the parenteral nutrition bag overnight. Ask your child’s healthcare team how you can obtain this type of pole.

Talk to your healthcare team about your child’s diet and hydration recommendations, based on their health status. Some children, especially those with shortened gut, may require extra hydration with intravenous fluids.

• Your child can continue his regular daily activities (eg, writing, brushing teeth, etc) but must avoid:
  • activities causing significant sweating; the dressing could fall off,
  • activities which may cause accidental displacement of the tubing and the catheter (eg, gymnastics, contact/competition sports),
  • the use of scissors near the catheter and tubing,
  • close contact with pets who may chew the tubing or the infusion pump,
  • lifting heavy objects with the arm where catheter is placed,
  • bathing/swimming (unless your child  has an implantable chamber catheter (eg, Port-a-Cath®) and the noncoring needle is not in place).
• If your child’s healthcare team agrees, your child can return to school. Notify your school’s staff of your child’s treatment and care as needed.

• Avoid exposing the pump and tubing to hot or cold temperatures. In cold weather, keep the pump and tubing under clothing and have your child wear a warm coat.
• Use a cooler to store the nutrition solution bag and a bag to store equipment, including the “troubleshooting kit” described below.
• When traveling by plane, keep the nutrition solution bag and equipment with you in the cabin. Request a letter from your child’s healthcare team which explains your child’s healthcare condition and need for parenteral nutrition.
• Healthcare travel insurance is recommended; check your existing policies or purchase insurance so your child is covered in the case that a medical issue comes up while traveling. Always have a “troubleshooting kit” on hand while your child is on IV treatment; take this on any trips away from home. The kit should contain the following items:
  • needleless connector,
  • extension tubing,
  • syringe pre-filled with saline solution and locking solution,
  • disinfecting pads,
  • transparent adhesive dressings,
  • clean gauze compresses,
  • adhesive tape to secure the dressing,
  • hemostatic clamp.

If your child has a peripherally inserted central catheter (PICC line), the blood pressure should be not be measured in the arm with the catheter; this might damage the catheter or the vein.