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There are many ways you can help children and their families get the care they need.
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:
What is parenteral nutrition?
For any of a long list of reasons, the intestines of some children are unable to digest food and provide the nutrition needed to live and grow. Parenteral nutrition is a way of providing that nutrition intravenously.
Parenteral nutrition solutions contain sugar, protein, fat, electrolytes, vitamins, and minerals 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.
Why give a child parenteral nutrition at home? 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.
Q: What is the goal of parenteral nutrition?
A: Parenteral nutrition helps children 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.
Q: What are the advantages to my child receiving parenteral nutrition at home?
A: 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.
Q: Will my child always need to receive parenteral nutrition?
A: It depends. The length of time your child will need parenteral nutrition depends 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.
Q: How can I explain parenteral nutrition to my children?
A: 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.
Q: How do I know my child is ready to go home from hospital?
A: Getting ready to go home is an important process. Your doctor will start talking about sending you home when your child no longer needs a lot of changes to his or her parenteral nutrition prescription or very frequent blood work. Your care team will also want to make sure there are plenty of helpful things in place, so you and your home care team can take reliably care of your child’s medical problems at home.
Do not be afraid to ask lots of questions and to ask your child’s nurses to let you practice using your child’s central line before going home. Home parenteral nutrition is a very specialized form of medical treatment, and your doctors and nurses want to make sure you have all of the information and support you need to do a great job.
Q: What supplies do I need to have at home?
A: 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.
Q: Who pays for home parenteral nutrition and supplies?
A: Your insurance provider should cover these costs.
Q: How often does my child have to see the doctor while on parenteral nutrition?
A: 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 two months. You should discuss the anticipated schedule of checkups with your doctor.
Q: Can my child still eat while receiving parenteral nutrition?
A: 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. Members of your child’s care team can help guide on how much your child can eat.
Q: Is there a special diet children on parenteral nutrition should eat?
A: 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.
Q: Why does my child need to be fed via feeding tube if s/he is already receiving parenteral nutrition?
A: Many children on parenteral nutrition are also fed by tube as well. 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.
Q: How should we store parenteral nutrition bags?
A: It depends on the specific parenteral nutrition fluids that your doctor prescribes, though most need to be stored in a dedicated refrigerator. Your home care company will give you specific instructions.
Q: What is 3-in-1 solution?
A: 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.
Q: What should I do if there is a problem with my child during a parenteral nutrition infusion?
A: 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.
Q: What should I do if my child’s pump won’t start or its alarm is sounding?
A: Call your home care company immediately. If you have a back up pump at home, you can use it.
Q: What should I do if my child’s catheter is cracked?
A: 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.
Q: What should I do if I cannot flush my child’s line?
A: Call the specialist in charge of your child’s care immediately. Do not forcefully flush the line, as this could injure your child.
Q: When should I call my child’s doctor?
A: 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.
Q: Can my child go to daycare while on parenteral nutrition?
A: 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.
Q: Should my child receive routine vaccines?
A: 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.
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