Frequently Asked Questions | Overview
We encourage patients and their families to contact us with any questions they may have, or bring their questions with them to their appointments. Here are some of the most common questions that are asked of us, as well as the answers we generally provide.
Parenteral nutrition (PN) solutions contain sugar, protein, fat, electrolytes, vitamins and minerals, and fat in a mixture tailored to the needs of the individual child, from seven-pound babies up to 130-pound teenagers. This formula is carefully developed by a registered dietician and calibrated to your child’s precise energy and medical needs.
The solution is delivered into a vein via a pre-programmed pump — bypassing the normal digestive system — usually at least 12 hours at a time. Over time, many children can be weaned off parenteral nutrition as their underlying medical condition improves.
Many of the conditions that would cause your child to need parenteral nutrition are chronic, but that does not mean they have to be in the hospital. Rather, we aim to help your child go home sooner and receive as much care as possible at home. Often children are able to receive their nutrition at night while they sleep, allowing them to lead normal, active lives.
Parenteral nutrition helps children and adults who cannot take nutrition by mouth or through a feeding tube live as normal a life as possible by delivering nutrition through a vein. It helps them stay well-hydrated and achieve appropriate height and weight milestones and activity levels.
Home nutrition lets your child continue to receive all the benefits of the nutrition regimen started in the hospital while limiting their time in the hospital. This allows your child to maintain a near-normal life, spend time with friends, engage in normal activities, and go to school — while helping caregivers return to work.
The length of time your child will need parenteral nutrition depends on the underlying condition that is keeping his or her intestines from working. We try to reduce the amount of intravenous nutrition as much as possible as a child’s intestines grow and recover. If necessary, many children can safely stay on parenteral nutrition for a long time.
Tell your son or daughter that the IV-nutrition bag replaces what your child cannot eat when the stomach or intestines doesn’t work. It’s like a juice box with lots of good nutritious stuff to keep your child healthy.
Ideally, you should have a dedicated space for supplies. Your home-care company will help set up your supplies, so they stay clean and organized. Your doctor will send prescriptions for all your supplies to be delivered to your home.
Your insurance provider should cover these costs.
It depends upon your child’s underlying condition, but regardless, your doctor will need to check your child’s blood on a regular basis to see if any changes need to be made to his or her parenteral nutrition prescription. Some children need to see their doctor as much as once per week at first, but most are seen every two months. You should discuss the anticipated schedule of checkups with your doctor.
Most children on parenteral nutrition should eat as much as possible — depending on their underlying condition — so that they do not forget how to eat. If your child has a feeding tube, it usually can be used for nutrition as well. Members of your child’s care team can help guide on how much your child can eat.
Not necessarily, but our program works with specialized dietitians and nutritionists who work with rest of your child’s team to give the very best advice about what to offer your child to eat.
Many children on parenteral nutrition are also fed by tube. This gives the stomach a chance to do its job and remain as healthy as possible. It may also help the intestines to continue to grow along with your child. Your doctor can help you if you have any questions.
It depends on the specific parenteral nutrition fluids that your doctor prescribes, although most need to be stored in a dedicated refrigerator. Your home-care company will give you specific instructions.
This is a special kind of parenteral nutrition fluid where the dietary fat is mixed directly with the sugar and protein. Not all patients can use this type of solution. Your doctor can tell you whether this kind of nutrition is appropriate for your child.
Every patient is different. The way the intestine functions and recovers are the main factors that determine how long your child will need to receive PN.
Call the specialist in charge of your child’s immediately for instructions. It may be necessary to save the solution, so do not throw anything out.
Call your home care company immediately. If you have a backup pump at home, you can use it.
Clamp the line and call the specialist in charge of your child’s care immediately. As a cracked catheter is a medical emergency, likely you will be told to go to the hospital.
Call the specialist in charge of your child’s care immediately. This may be an early sign of catheter breakage.
Call the specialist in charge of your child’s care immediately. Do not forcefully flush the line, as this could injure your child.
Call the specialist in charge of your child’s care immediately to discuss whether a chest x-ray is needed to determine whether catheter has moved out of position.
Dispose of the bag, and use a new bag. Do not reuse tubing if you’ve already primed the tubing.
You should feel comfortable calling your doctor any time you have a question or concern. Some common concerns that your doctor will want to know about include fever, chills, flushing, tiredness, diarrhea, vomiting, decreased or increased urination, and any changes in behavior. You should definitely call your doctor about any problems during one of your child’s infusions, cracked catheters, or if you cannot flush your child’s line.
Contact the specialist in charge of your child’s care, so sign-out can be provided to facilitate your transition.
Contact the specialist in charge of your child’s care. Your child may need to be evaluated by a medical provider.
It depends on the nature of your child’s medical and nutritional needs. Ideally, your child should go to a day care center with skilled staff specifically trained to care for children on parenteral nutrition. We can work with you to identify these centers.
Talk with the specialist in charge of your child’s care before participating in any water sports. There have been reports of central line infections associated with swimming.
Talk with the specialist in charge of your child’s care about any medications, vitamins, or supplements you might be taking. There have been reports of central line infections associated with certain probiotics.
You should talk to your pediatrician. Vaccines are a very important way of protecting your child from getting sick. Children receiving parenteral nutrition in general should receive routine vaccines.