Frequently Asked Questions

Total parenteral (pronounced pa-ren-ter-ull) nutrition is often referred to as TPN for short. TPN is intravenous or IV nutrition. This means that if your child is on TPN, he or she is getting all of his or her nutrition - total nutrition- intravenously or through an IV. According to Jane Anne Yaworski, MSN, RN, a Clinical Nurse Specialist in the Nutrition Support Service and Intestinal Care Center, "parenteral" actually means to eat (-enteral) through an IV (par-).

The total parenteral nutrition (TPN) solution will provide your child with all or must of his or her calories and nutrients. The solution contains protein, carbohydrates (in the form of glucose), glucose, fat, vitamins, and minerals. Protein is important for building muscle strength. You normally get protein by eating things like meat, cheese, and eggs. Carbohydrates and glucose-or sugar-are needed to give the body energy. You normally get carbohydrates and glucose from foods like pasta, bread, and fruits. Even though TPN contains fat, it will not make your child get fat. Everyone needs a certain amount of fat to stay healthy.

TPN is used when all or part of a person's digestive system does not work. A person may need TPN because of a gastrointestinal (GI) disorder that severely limits the ability of their digestive tract. A person may not be able to swallow food, move the food through the digestive system, or absorb nutrients from the food. Children who are on TPN may have short bowel syndrome commonly known as short gut syndrome. Short gut syndrome is a condition in which most of the small intestine is either missing or doesn't work. The small intestine is very important. It helps you absorb nutrients from the food you eat. Other reasons that a child may need total parenteral nutrition (TPN) are intestinal diseases like microvillus inclusion disease (MD), or injury or trauma to the intestines. Many children who are on the waiting list for and intestinal transplant are on TPN.

Total parenteral nutrition (TPN) may also be used for children who need to supplement their diet and make up for the nutrients they are not getting from eating. Some children are able to eat, but their intestines can't absorb the nutrients from their food. In this case, TPN will be used even though the child is able to eat.

If your child needs TPN, it is because he or she isn't able to get all of his or her nutrition eating a regular diet by mouth. It is important for your child to get proper nutrition in order to be strong and healthy.

Complete or total nutrition is especially important for the growth and development of infants, children, and teens. If a child does not get all of the nutrients he or she needs, then he or she may have developmental or growth delay. This means that he or she would not grow and develop like you would expect. If your child is not getting proper nutrition, then he or she may not be as tall or weigh as much as other children of the same age. Infants especially may not reach developmental milestones like rolling over and crawling. TPN will help your child get the nutrition he or she needs needs to grow and develop.

Your child's TPN solution will be customized to meet his or her individual nutritional needs. Your child will have labwork done regularly. His or her TPN solution will be mixed according to the results of the labwork. Your child's blood will tell the nutritional support team which nutrients your child needs.

The total parenteral nutrition (TPN) solution comes mixed in a bag. It is given to your child like a regular IV (an IV that keeps your child hydrated by giving him or her fluids). A catheter (or small tube) will be placed in one of your child's main blood vessels. It may be in his or her neck, chest, leg, or groin. The TPN will go into your child's body through the catheter. The TPN will travel through the catheter into your child's bloodstream. The tip of the catheter will be in your child's right atrium, a chamber of the heart which provides access to the bloodstream.

Normally, when a person eats, the nutrients must travel through the digestive system before being absorbed into the blood. Because your child's digestive system does not work like it should, a shortcut is needed to get the nutrients absorbed into the bloodstream. The nutrients provided by total parenteral nutrition are absorbed directly into the body by the blood.

Once your child has a catheter, it will not have to be replaced unless it stops working. It may also need to be replaced if your child gets an infection. Once your child no longer needs TPN and can get his or her complete nutrition by mouth or enteral feeding, the catheter will be removed.

The rate at which your child's TPN is delivered will be controlled through an IV pump. TPN pumps are generally portable and in the style of a backpack. Whether it is just to move around the house or to go on vacation, the backpack allows for mobility and travel while your child is on TPN.

Each child's situation is different, and the amount of time he or she spends hooked up to TPN may vary. Your child may be hooked up to TPN once a day for 5 days days a week for ten to twelve hours.

Your child may be on TPN permanently or only temporary. It will depend on your child's underlying disease or problem that caused the need for total parenteral nutrition. IF your child has has an injury, short term illness, or intestinal transplant, it is possible that once he or she recovers, TPN may be stopped and he or she will go back to regular eating or enteral feeding.

You also may have heard of enteral feeding. Enteral (pronounced en-ter-al) nutrition is another way a person can receive the nutrients he or she needs to survive. Enteral nutrition is also called tube feeding. Enteral nutrition is used when a person's digestive system works to some extent. The feeding tube is given directly into part of the digestive system. It can be through a gastrostomy tube (g-tube) in the stomach or a jejunostomy tube (j-tube) in the small intestine. Enteral solution is thicker than TPN. It may have the consistency of a milkshake.

Total parenteral nutrition bypasses the digestive system entirely and goes directly into the bloodstream, where the nutrients are absorbed. The solution is given through a catheter that has been placed in a vein.

TPN is not painful, but it will probably change your family's and your child's lifestyle. TPN may be an inconvenience. Foe example, it may be more difficult for your child to go to a sleepover. Although TPN does change things, it is not and should not be the end of a normal routine and normal activity for you or your child. There will be disruptions, but with the help and support of your home infusion company and the Intestinal Care Center, you should try to minimize them as much as possible. Maintaining a sense of normalcy is important for both you and your child, no matter how old he or she is.

While your child is on TPN, he or she can do many, if not most, of the same things that other children of the same age can do. Many limitations will depend on why your child needs TPN- or on his or her underlying disease or problem - and its affect on how well your child feels in general. As long as your child feels well, encourage him or her to stay as active as possible and to continue doing normal activities for his or her age.

Activities to avoid are swimming and contact sports. Things like soccer, gymnastics, baseball, and riding bikes are safe and may be fun for your child. If you ever have any doubts or questions about the safety of participating in an activity, be sure to call your nurse at the Intestinal Care Center.

Being on TPN may be the most difficult mentally for teenagers. They may be more concerned about their body image and being able to live a "normal" teenage life. According to Jane Anne Yaworski, MSN, RN, of the Nutrition Support Service and Intestinal Care Center, teenagers are also more likely to have issues with compliance. They may disconnect their TPN before they should or sometimes not do it at all. It is important to try to recognize if this is happening so you can address the problem with the help of the Intestinal Care Center.

It may be especially helpful for teens to get in contact with other kids who are on TPN. IT may also be helpful for you to get in touch with other families who have a child on TPN. The nutrition support team can help you get in touch with other parents and children who are on TPN and who may be dealing with and going through the same things you are. There are also support groups available for families and the children who are on TPN. The Oley Foundation is on such example. The Oley foundation is a national, non-profit organization. It provides information, outreach services, and emotional support for persons on TPN, their families and caregivers.

Approximately 40,000 people in the United States receive TPN at home. Before your child leaves the hospital after being put on TPN, a clinical nurse specialist or educator in nutrition support will give you detailed instructions and help you prepare for returning home. He or she will teach you how to administer TPN, how to take care of the equipment, how to recognize a problem and what to do in case of an emergency.

Depending on your child's age, he or she may also may be involved in the learning process. The more involved your child is, the better. Taking an active role in treatment can help your child feel like he or she has some control over his or her medical condition. Your child may be more likely to comply with instructions and medications if he or she is involved and active in his or her own care.

The time when your child first goes on TPN will probably be the most difficult as you learn a new routine, and how to take care of your child's TPN needs. You may have trouble at first and become easily frustrated. Just like with anything, as time goes on and with practice, total parenteral nutrition will probably get easier for both you and your child. It will just become another part of your family's daily routine.

Once you and your child return home from the hospital, you will usually do your child's TPN infusion at night while he or she is sleeping. This will minimize daily disruption and your child will not have to deal with tubes and pumps during the day.

Remember to call your home infusion company or the Intestinal Care Center with any questions, doubt, worries, problems, or concerns. They are there to help you and your child.

There are many different types of TPN pumps. Each type of pump operates and is taken care of differently. The one your child will receive depends much in part on your family's health insurance and home infusion company. A home infusion company specializes in providing infusion therapy, such as TPN, in the home. Infusion therapy is any therapy that is given intravenously (through an IV), subcutaneously (under the skin), or as an epidural (in the areas around the spinal cord). It is a good idea for you to speak with your insurance company about choosing a home infusion company.

There are risks associated with TPN. Some of the most common are:

Infection

It is important to be able to recognize the signs ans symptoms of infection. Before your child leaves the hospital on TPN, you will learn what the signs and symptoms of infection are. Call your child's clinical nurse specialist or doctor immediately if he or she has a fever or experiences any of the following at their catheter site:

• Tenderness
• Warmth
• Irritation
• Draining
• Swelling
• Redness
• Pain

TPN Liver Disease or Damage

TPN increases the risk of having liver disease and damage. Infants and young child on TPN are more at risk for liver disease than older children and adults. The organs of infants and younger children are still developing. They are not as capable of handling the burden and strain that TPN puts on them. Children who are on TPN for a long time are also more at risk than those who are on TPN temporarily or for a short time. Some children who require an intestinal transplant may also receive a liver transplant at the same time due to liver disease associated with their use of TPN.

Growth and Developmental Delays

Although TPN will help your child grow and develop, TPN is not as complete as being able to get nutrition by eating a regular diet. Children on TPN may still be smaller and less developed than other children their age.

Many children who are on TPN need an intestinal transplant. Many children on TPN are on the waiting list for an intestinal transplant. The Nutritional Support Service and Intestinal Care Center at Children's Hospital work closely with the transplant center and its surgeons and dietitians. Once a child receives his or her new intestine, the goal at Children's Hospital of Pittsburgh is to stop TPN entirely before the child leaves the hospital post-transplant.

When your child is discharged, he or she will probably be on IV hydration to make sure his or her body is getting enough fluids and enteral feeding - or tube feeding. The goal is to gradually decrease tube feedings as your child is able to get more nutrition through eating. If your child is able to resume eating and meeting all of his or her nutritional requirements, the tube feedings can be discontinued as well.