Home Parenteral Nutrition

Home Parenteral Nutrition What is Home Parenteral Nutrition? Home Parenteral Nutrition (PN) is a home method by which food is given through a vein (intravenously). Boston Children s Hospital doctors, nurses, and dietitians (nutrition experts) teach you how to give PN on your own to your child or teen at home. PN is a mixture of: Water; Sugar; Protein; Fat; Electrolytes; Vitamins; and Minerals. PN is mailed to your home weekly in a refrigerated box. You will need to put the PN in your fridge right away. To give PN to your child or teen, you will need to place a needle filled with PN into your child or teen s vein (intravenous catheter). The PN travels through the body rather than through the normal digestive tract. Who should get Home PN? Home PN is given to people who are not able to get the right amount of nutrition and/or liquids by mouth or feeding tube. Babies, children, teens and adults can get Home PN. People that need Home PN may have short bowel syndrome, trouble moving the intestines (gastrointestinal motility dysfunction), inflammatory bowel disease (IBD), or other illnesses leading to gastrointestinal (GI) problems. Who should not get Home PN? People who are able to get the right amount of nutrition by mouth or feeding tube should not get Home PN. Are there other choices for treatment other than Home PN? It is important to talk with your doctor about all your choices before starting a Home PN program. Some other choices are getting Home PN in a hospital, using some other Home PN program closer to your home, or not having your child or teen get Home PN treatment at all. What if my child/teen has a food allergy, such as to egg or soy? Tell your Home PN doctor, nurse, and/or dietitian if you think your child or teen might have a food allergy, such as to egg or soy. An allergy to these foods can change the way PN is given. What are the steps for checking my child/teen s Home PN progress? Your Boston Children s Hospital Home PN team is made up of doctors, nurse practitioners, dietitians and pharmacists. Your child or teen needs to be seen by the Home PN team at least every 2 to 3 months for routine office visits. It is important that you keep visits with other doctors along with visits to your Home PN doctor. Your child needs to have lab work done at set times, most often once a month. We prefer that the lab work is done at Boston Children s Hospital or one of our satellite offices. If your child or teen s lab work is done at Boston Children s Hospital, the results are ready right away to doctors on your Home PN team. What are the risks of Home PN? Home PN is a life-saving treatment, but it has some side effects that you should know about. Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 1 of 2 #162319

Family Education Sheet Home Parenteral Nutrition Mild to Moderate Problems Skin infection at the site where the catheter was put into your child or teen s vein High or low blood sugar Dehydration (lack of fluids in body) IV Catheter problems (for example: leaking, breaking and/or clogging) Need for extra lab testing Unplanned stays at the hospital Severe Problems Liver injury Blood clots Changes in electrolyte levels Blood-stream infections When should I call for help? You should immediately call your Home PN team at Boston Children s Hospital for help when your child or teen has: Signs of infection such as more fussiness or uncomfortability than normal Fever greater than 38 degrees Celsius or 100.4 degrees Fahrenheit Chills Flushing Nonstop sleepiness More diarrhea (loose bowel movements) or vomiting (throwing up) than normal More or less urination (peeing) than normal Any trouble with the catheter and/or catheter site (for example: trouble flushing, resistance to infusing, puss, redness, swelling, pain) Yellow skin, bleeding or bruising Problems with PN bag or pump Any other worry My Home PN Team Members are: Role Name Phone Number HPN Doctor: HPN Nurse Practitioner: Dietitian: Home infusion company: Home Nurse: Enteral supply company: Compound pharmacy: How do I reach the Home PN team? Office phone number: 617-355-6439 Page for urgent issues: 617-355-6000 #3226 How can I learn more? Boston Children s Home PN Program: www.childrenshospital.org/hpn The Oley Foundation: www.oley.org A Spanish version of this education sheet is available from your provider. Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 2 of 2 #162319

Your Home Parenteral Nutrition (HPN) Team As part of Boston Children s Hospital s Home Parenteral Nutrition (HPN) program, you will be working with many hospital staff to care for your child or teen. This sheet tells you about the members of your child or teen s HPN team and their jobs. Core Home PN Team HPN Gastroenterologist Your lead HPN doctor is a gastroenterologist (GI doctor) with specialized training in giving nutrition support in the vein (intravenously). Your HPN gastroenterologist will: Supervise your training in giving HPN to your child or teen; Look at all of your child or teen s health issues; Give a parenteral nutrition schedule; Adjust nutrition plan, working with the rest of the HPN team, according to your child or teen s growth and response to the HPN care; and Speak often with your other child or teen s doctors to keep them informed about your child or teen s progress. HPN Nurse Practitioner Your HPN nurse practitioner is a health care expert who is trained to manage parenteral nutrition. Your HPN nurse practitioner will: Teach you skills needed to manage HPN with success; Check on your child or teen s health; Make changes to your child or teen s nutrition regimen; Listen to your feelings about HPN; Answer your questions when they come up; Help you solve problems about HPN; Plan your child or teen s care with other providers; and Work with community agencies to make sure you get all the supplies you need. Your HPN nurse practitioner is who you will speak with most on a day-to-day basis as part of the HPN program. You should tell this person if there is something bothering you when you give HPN to your child or teen. HPN Dietitian Your HPN dietician is a licensed expert on nutrition. Your HPN dietician will: Work out your child or teen s nutritional needs, making sure he/she gets all the nutrition needed to grow and thrive; Make sure you re feeling okay when giving your child or teen Home PN treatment; Watch your child or teen s progress by looking at height and weight, as well as checking specialized lab tests; Make recommendations to better your child or teen s nutrition plan. Your HPN dietician will see you at all of your routine HPN visits. You You know who you are, of course. You and your family are the most important members of the HPN team. You are always the expert on your child or teen. You should let us know when things are working and when you re having trouble. As a parent, you are the first one to know when your child or teen isn t feeling well. Other Team Members Inpatient Team Your inpatient team is a group of health care providers who do their best to bring your child or teen s health back to normal when he/she is sick enough to stay in the hospital. Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 1 of 2 #162320

Family Education Sheet Your Home Parenteral Nutrition (HPN) Team This is the team who you will see daily while your child or teen is staying in the hospital. You should tell this team if you are worried about something while your child or teen is staying in the hospital. The inpatient team may or may not include members of your HPN team. Social Worker Your social worker will help you and your family to solve problems when issues come up. He/she will let you know about community services that might be helpful, and will help you and your child or teen to deal with changes in your life as a result of living at home on PN. Case Manager Your case manager will work with you and your hospital team to manage all the supplies and services you need to give HPN successfully. This person will put you in touch with community services that might work best for you. Home Infusion Company Your home infusion company is a specialized pharmacy outside the hospital that will make your child or teen s HPN bag and IV medicines. There are many home infusion companies, so it is important to know which one is yours. Your HPN company will set up and care for your child or teen s infusion pump. This company also works closely with your Boston Children s Hospital s HPN team to get the best products recommended by your HPN team. Your home infusion company will be responsible for checking with your HPN team before making any recommendations or changes. Nursing Agency A nursing agency is a company outside the hospital that will supply you with nurses to help you with giving HPN. The nurses are there to help you give the best care. My Home PN Team Members are: Role Name Phone Number HPN Doctor: HPN Nurse Practitioner: Dietitian: Home infusion company: Home Nurse: Enteral supply company: Compound pharmacy: If you have an urgent problem, page the HPN health care provider on-call at 617-355-6000 #3226. A Spanish version of this education sheet is available from your provider. Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 2 of 2 #162320

Home Parenteral Nutrition (HPN) Glossary As part of Boston Children s Hospital s Home Parenteral Nutrition (HPN) program, you will hear many words and phrases about your child or teen s care. This glossary will help you better understand these words and phrases. Additive something you have to add to parenteral nutrition bag Administer to give therapy or medicine Amino acid building blocks of protein for muscles Ampule set amount Anemia when there is not enough of a type of blood cell, making you feel tired and look pale Antibiotics medicine to treat infection Aseptic most clean way to avoid infection Bacteria germs that make you sick Broviac type of central catheter that sticks out of the skin, most often in the chest Calcium mineral important for body to work, especially bones, muscles and heart Catheter tube for giving medicine and fluids, can be central or peripheral (see below) Catheter clamp something that stops fluid from flowing back Central catheter tube for delivering fluids or medicine as close to the heart as possible Constipation less frequent, hard poops Contamination dirty with germs that can make you sick Cyclic giving medicine in less than 24 hours Dehydration when you don t get enough liquids, very thirsty, peeing less than normal Dextrose - sugar Diarrhea frequent, loose, and/or large poops Dressing cover over catheter to keep it clean Electrolytes salts that keep body working okay Enteral anything given into stomach or intestine, sometimes by using a feeding tube Exit site where catheter comes out of skin Expiration date date printed on medicine and PN indicating when it goes bad, no longer safe to use Fever when body temperature is high, like greater than 100.4 F or 38 C, possibly meaning infection Fibrin sheath clot on the end of a central catheter that can cause blockage, making it hard to draw back blood or hard to flow in liquids Filter tool that traps substances and air bubbles that you attach to intravenous (IV) tubing Flush push of fluid to get everything through the catheter Gastroenterologists (a.k.a. GI doctor ) type of doctor specializing in the digestive system including the stomach, the intestines and the colon as well as nutrition Gastrostomy tube (a.k.a. g-tube) feeding tube that goes straight from skin into stomach Gauge size of catheter (for example: French) Gauze clean cotton dressing Heparin medicine used to prevent blood clots in the central catheter. Hub end of the central catheter where the intravenous (IV) tubing connects. Huber needle special type of needle used to access Port-a Cath Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 1 of 3 #162321

Family Education Sheet Home Parenteral Nutrition (HPN) Glossary Hyperglycemia when sugar in the blood is too high, most often feel fine, sometimes pee too much, too thirsty, too hungry Hypoglycemia when sugar in the blood is too low, sometimes feel fine, can feel shaky, pale, heart racing Jejunostomy tube (a.k.a. j-tube) feeding tube that goes from skin into second part of intestine Infection when there are germs inside of you that can make you sick Infiltration when liquids leak out of the vein Infusion liquids (PN, lipids, medicines, hydration fluid) flowing into body Infusion pump machine that moves medicine, hydration and parenteral nutrition into the body by the catheter. Insertion site place where central catheter goes into skin Intake total of how much stuff goes inside the body from mouth, feeding tube, and intravenous (IV) Intralipids brand-name intravenous (IV) soybean lipid Intravenous anything that goes into the vein Intravenous hydration bags of fluid that can contain some sugar and salts Iron mineral important to prevent anemia, helps make red cells Lipids fat, oils Lumen opening of central catheter Magnesium mineral important for body to work, especially heart and muscles Milliliter (ml) set amount. 5 ml is a teaspoon. 30 ml is an ounce. Minerals type of substances important for your body, like iron Nutrients substances giving nourishment for you to grow and stay strong Occlusion blockage of central catheter Omegaven brand-name intravenous (IV) fish oil Output what comes out of body (vomit, pee, poop) Parenteral into the vein, same thing as intravenous Peripheral arms and legs Phosphorus mineral important for body to work, especially heart and muscles. PICC (a.k.a. peripherally inserted central catheter) small central catheter that goes from arms or legs through skin and into heart Port-a-Cath type of central catheter with its end sitting underneath skin Potassium mineral and electrolyte important for all the part of your body to work. Priming filing tubing with fluid and taking air out before infusion Procedure series of steps to get something done Protein type of nutritious substance importance for growth and strength Rate the speed that the medicine or fluid goes in Sodium important salt for your body Saline flush fluid used to clean-out medicine and PN in the central catheter Septic serious sickness where germs are flowing though your whole body Short bowel syndrome condition where parts of your bowel are removed or sick leading to trouble digesting food the right way Side effect something that sometimes happens when you take your medicine as well as the effect of making you feel better Solution fluid mixture Spike sharp tip of intravenous (IV) tubing stuck in in IV medicine, IV fluid or PN bag Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 2 of 3 #162321

Family Education Sheet Home Parenteral Nutrition (HPN) Glossary Stoma surgical opening where feeds enter body or fluids leave body Surgeon type of doctor that does operations Syringe tube with pump that injects medicine in and sucks blood out Systemic throughout whole body Sterile germ-free supplies Stool - poop Superior vena cava (SVC) large blood vessel where central catheter tip is supposed to end Three-in-One (3:1) type of Parenteral Nutrition (PN) where sugar, protein and fat (3 types of nutrition) come in the same bag Thrombosis blood clot that occurs in central catheter Trace elements metals that are needed in very small amounts for your body to work right Transparent dressing cover for central catheter that is see-through Tubing plastic material that carries medicine and fluids into central catheter Two-in-1 (2:1) when only sugar and protein are mixed together in PN bag, fat is kept in a separate bag Urine pee Vial small bottle with medicine or vitamins Vitamins type of nutritious substance to keep you healthy, like vitamin D Volume amount of liquids Vomit puke, upchuck, barf, throw-up A Spanish version of this education sheet is available from your provider. Boston Children s Hospital, 2013 All rights reserved. Publication Date 12/5/2012 page 3 of 3 #162321

Prevention of Central Line-Associated Bloodstream Infections What is a central line? A central line or central catheter is a tube that is placed into a patient s large vein, usually in the neck, chest, arm or groin. This catheter may be used to draw blood, or to give fluids or medications. It may be left in place for several weeks or longer. What is a central line-associated bloodstream infection? A central line-associated bloodstream infection is an infection that can occur when bacteria or other germs travel down a central line and enter the blood. If you/your child develop a central lineassociated bloodstream infection, you/your child may become ill with fevers and chills or the skin around the catheter may become sore and red. Can a central line-associated bloodstream infection be treated? This type of infection is serious, but often can be successfully treated with antibiotics. The catheter might need to be removed if an infection develops. What are some of things that Children's Hospital Boston is doing to prevent central line-associated bloodstream infections? To prevent these infections, doctors and nurses at Children's Hospital Boston will: Choose a vein where the catheter can be safely inserted. Clean their hands with an alcohol hand sanitizer or soap and water before putting in the catheter. Wear a mask, cap, sterile gown, and sterile gloves when putting in the catheter to keep it sterile. The patient will be covered with a sterile sheet during the procedure. Clean the patient s skin with an antiseptic cleanser before putting in the catheter. Clean their hands, wear gloves, and clean the catheter opening with an antiseptic solution before using the catheter to draw blood or give medications. Clean their hands and wear a mask and gloves when changing the bandage that covers the area where the catheter enters the skin. Decide every day if the catheter is still needed. The catheter will be removed as soon as it is no longer needed. Carefully handle medications and fluids that are given through the catheter. What can patients and families do to help prevent central line-associated bloodstream infections? Ask your/your child s doctors and nurses to explain why the catheter is needed and how long it will be in place. Ask your/your child s doctors and nurses if they will be using all of the prevention methods discussed above. Make sure that all doctors and nurses caring for you/your child clean their hands with an alcohol-based hand sanitizer or with soap and water before and after caring for you/your child. If you do not see your providers clean their hands, please ask them to do so. If the bandage covering the catheter comes off or becomes wet or dirty, tell your nurse or doctor immediately. Tell your/your child s nurse or doctor if the area around the catheter is sore or red. Do not let family and friends who visit touch the catheter or tubing. Boston Children s Hospital, 2013 All rights reserved. Publication Date 1/28/10 page 1 of 2 #166604

Family Education Sheet Prevention of Central Line-Associated Bloodstream Infections Make sure that family and friends clean their hands with alcohol hand sanitizer or soap and water before and after visiting you. What do patients/families need to do when going home from the hospital with a catheter? Some patients are sent home from the hospital with a catheter in order to continue their treatment. If you/your child goes home with a catheter, your doctors and nurses will explain everything you need to know about taking care of the catheter. Make sure that you understand how to care for the catheter before leaving the hospital. For example, ask for instructions on showering or bathing with the catheter and how to change the catheter dressing. Make sure you know who to contact if you have questions or problems after you get home. Make sure you clean your hands with alcohol hand sanitizer or soap and water before handling the catheter. Watch for signs and symptoms of infection, such as soreness or redness at the catheter site, or fever, and call your healthcare provider immediately if any occur. The content of this family education sheet has been adapted from a materials sponsored by the Centers for Disease Control and Prevention (CDC), The Joint Commission, the American Hospital Association, the Association for Professionals in Infection Control and Epidemiology (APIC), the Infectious Disease Society of America (IDSA), and the Society for Healthcare Epidemiology (SHEA). A Spanish version of this is available from your provider. Boston Children s Hospital, 2013 All rights reserved. Publication Date 1/28/10 page 2 of 2 #166604

Home Care Instructions for Implanted Port Care Your child is going home with an implanted central venous catheter called a port. The port is placed completely under the skin. There is a small disk that has a slightly raised rubber center. (See Figure 1.) Whenever the port is used for intravenous (IV) therapy, a special needle set, called a non-coring needle set, is inserted into the center of the disk. (See Figure 2.) The non-coring needle set has a clamp and cap on the end of it. The needle is always covered with a sterile dressing that helps to hold it in place. The dressing also helps to keep germs from getting into the needle site. Both the needle and dressing are changed at least every 7 days. When the port is not being used, the needle and dressing (bandage) are removed. Care of your child's port involves: changing the dressing and needle every week, changing the cap, and flushing the port. Use of the Port A nurse will be available at home or in the clinic to help you change the needle and dressing at least once each week. Some patients prefer to have the needle removed in between IV treatments. In this case, the needle and dressing are changed more often. Your child's doctor will discuss with you what is best for your child. If the needle and dressing will be changed more than once each week, you will receive special training and more information. When to Call Your Child's Doctor or Nurse Problems can develop with ports. It is important that you understand what these problems might be and how to take care of them. Most can be corrected if noticed early enough. Infection Sometimes the catheter or site can become infected. Call immediately if you notice: redness, swelling, drainage, or pain at the port site; increased tiredness or irritability; fever greater than 100 F; or shaking chills. Clotting Figure 1 The port could become blocked with a blood clot. If you are not able to inject the heparin flush easily, the line could be blocked. Stop trying to inject the heparin, and call your child's doctor or nurse right away. Children's Hospital Boston Center for Families 300 Longwood Avenue Boston, MA 02115 www.childrenshospital.org Children s Hospital Boston, 2013 All rights reserved. Publication Date 1/29/2009

Family Education Sheet Home Care Instructions for Central Venous Catheter Care Clotting The line tip could become blocked with a blood clot. If you are not able to inject the heparin flush easily, the line could be blocked. Stop trying to inject the heparin, and call your child's doctor or nurse right away. Infiltration The line could slip out of the vein into the nearby tissue. If this happens, the area near the line will swell during an IV infusion. Stop the infusion. Do not give a heparin flush. Call your child's doctor or nurse right away. Dislodgement The line could slip out of the body completely. If this happens, there will be some bleeding at the site. Cover the site with sterile gauze. Apply light pressure with the sterile gauze until the bleeding stops. Call your child's doctor or nurse right away. Air embolism When removing or replacing the line cap, it is extremely important to clamp the line. This prevents air from entering the vein. This is called an embolism. If a large amount of air gets into the vein, strong chest pains will result. Your child may also have trouble breathing. Clamp the line right away if you notice these symptoms. Lay your child on his or her left side to help prevent the air from moving further into the vein. Call for emergency help right away. Important Tips If your child is not able to hold still while you care for the line, have someone help you. It is very important to keep the line clean to prevent infection. Follow all instructions carefully to help prevent infection. Always wash your hands thoroughly before touching the line. It is not only soap but also the scrubbing action that cleans your hands well. Proper handwashing is very important in preventing infection. Using sterile technique will also help prevent infection. The skin around the line must be cleaned and the sterile dressing changed every 7 days or whenever it becomes wet, soiled, or loose. The line cap must be cleaned well with alcohol each time before using it. Sponge bathe your child for the first 7 to 10 days after the CVC is placed. Then baths and showers may continue as usual. Cover the line and dressing with either a larger second layer of transparent dressing, or a plastic wrap (such as Saran Wrap ) around the chest. Right after bathing, apply a new line dressing. Swimming is not permitted while the line is in place. Swimming could result in an infection because of germs in the water. It is important to give the normal saline and heparin flushes as ordered to help prevent a clot. Secure the line so it does not stretch and pull. (See "Home Care Instructions for Central Venous Catheter Dressing Changes".) A Spanish, Chinese, and Arabic version of this Family Education Sheet is available from your provider.

Home Care Instructions for Implanted Port Dressing Changes All types of central venous catheter (CVC) dressings must be changed every 7 days or whenever the dressing is loose, wet, or soiled. This sheet gives you instructions on how to change the implanted port type of CVC dressing. Preparation Do the dressing change in a quiet room with the door closed. There should be no air blowing from open windows, fans, or heaters. Remove all dangling jewelry from hands, wrists, and arms. If you have long hair, tie it back. Prepare a clean work surface. Wipe the area being used for supplies with rubbing alcohol and let it air dry. For wood surfaces, put down a clean towel. Open the dressing kit touching only the edges of the package. Put on the mask. Wash your hands well with liquid soap and water. Dry your hands with paper towels. Use the paper towels to turn off the faucet. Proper handwashing is very important in preventing infection. Using sterile technique will also help prevent infection. Steps 1. Tell your child what you will be doing. 2. Have your child lie down. Tell him or her to keep hands away from the port. If your child is not able to hold still while you care for the port, have someone help. 3. Remove the old dressing carefully. Drop it into the wastebasket without touching anything. 4. Look at the area. See below for when to call your child's doctor or nurse practitioner. 5. Put on the sterile gloves. 6. Pinch the wings of the Chloraprep applicator until the sponge becomes wet. Press the sponge on the skin gently until the liquid is visible. Using a back and forth gentle scrubbing motion completely clean a 2 inch margin around the needle exit site. Continue to scrub this area for 30 seconds. You may rotate the needle slightly to clean the skin thoroughly. 7. Let the area air dry. Do not fan it dry or pat with your hands. 8. Place 2 or 3 folded 2" x 2" gauze pads in the space between the needle and skin. 9. Fold a 2 x 2 gauze pad in half and place it over the wings of the non-coring needle set. 10. Place the transparent dressing over the gauze and needle. Press lightly to secure it to the skin. 11. Take off the gloves. 12. Secure CVC to ensure dressing is occlusive. There are two ways to proceed: See Figure 1 right Ø Slip tape that comes with the dressing under tubing and over edge of dressing; OR See Figures 2-5 below Ø Place the first piece of tape half on the transparent dressing and half on the skin. Figure 1 Ø Split the second piece of tape almost in half. Put it under the needle extension set. Half will be on the skin and half will be on the first piece of tape. Ø Place the third piece on top of the second to seal the area where the non-coring needle set tubing comes out of the dressing. Ø Loop the non-coring needle tubing up and tape it to the chest or secure the line to your child s clothing.

Family Education Sheet Home Care Instructions for Central Venous Catheter (CVC) Dressing Changes 11. Before placing the transparent dressing on the line site, make a small loop in the line (see Figure 1). Place the transparent dressing over the CVC. Press lightly to secure to the skin. 12. Take off the gloves. 13. Tear off 3 pieces of tape, each 2 inches long. 14. Place the first piece of tape half on the transparent dressing and half on the skin. (See Figure 2.) 15. Split the second piece of tape almost in half. Put it under the CVC. Half will be on the skin and half will be on the first piece of tape. (See Figure 3.) 16. Place the third piece on top of the second to seal the area where the line comes out of the dressing. (See Figure 4.) 17. Loop the line up and tape it to the chest (See Figure 5.) or secure the line to your child's clothing. (See "Home Care Instructions for Changing the CVC Cap".) When to Call Your Child's Doctor or Nurse Call if: the site looks red; fluid is draining from the site; your child complains of pain at the CVC site; your child has a fever greater than 100 F; the length of the line appears longer or shorter; or you have any questions or concerns. Figure 2 Figure 3 Figure 4 Figure 5 Transparent Dressing Transparent Dressing Transparent Dressing 1 st piece of tape 2 nd piece of tape 3 rd piece of tape Secure line to over line under line over line chest or clothing An Arabic and Spanish version of this is available from your provider Send comments or questions to: Familyed@childrens.harvard.edu Children s Hospital Boston, 2013 All rights reserved. Publication Date 1/29/2009 page 2 of 2

Home Care Instructions for Flushing an Implanted Port Your child's implanted central venous catheter, called a port, must be flushed with a special medicine called heparin. Heparin helps to prevent a blood clot from forming which could clog or block the line. Your child's port must be flushed after each IV (intravenous) treatment. If the port is not being used for IV treatments, you must flush it once a month. Heparin flushes come to you in pre-filled "unit dose" syringes. There is a cap attached to the end of the non-coring needle set. This cap is used for routine heparin flushes. Your nurse will teach you the proper way to flush your child s line before you leave the hospital. The port is flushed with 10mLs of normal saline then 5 mls of heparin. If the port is flushed once a day or less, use 100 units/ml of heparin saline solution. If the port is flushed more than once each day, use 10 units/ml of heparin saline solution. Ask your child's doctor or nurse practitioner what to use for your child. Preparation Prepare a clean work surface. Wipe the area to be used for supplies with rubbing alcohol. Let it air dry. For wood surfaces, put down a clean towel. Wash your hands well with liquid soap and water. Dry your hands with a paper towel and turn off the faucet using the paper towel. Proper handwashing is very important in preventing infection. Using sterile technique will also help prevent infection. Gather the following items: Ø 10mL syringe filled with normal saline solution Ø 10 ml syringe filled with 5 mls heparin solution Ø 2-3 alcohol prep pads Ø 2-3 packages of 2 inch sterile gauze pads Steps 1. Tell your child what you will be doing. If your child is not able to hold still, have someone help. 2. Hold the syringe filled with normal saline with the opening pointing up. Gently tap the side of the syringe to move any air bubbles to the top. Gently push on the plunger to remove air. Replace the cap on the syringe. 3. Repeat #2 with the heparin syringe. 4. Open the package of sterile gauze pads. Leave the pads on the inside of the packages 5. Open the alcohol prep pads and Gauze pad place each one on Alcohol pad the gauze pads. (See Figure 1.) Touch only 1 corner of the Figure 1 alcohol pad. 6. Unclamp the Non-coring needle set and scrub the end of the cap for at least 15 seconds with an alcohol pad on the gauze pad. 7. Remove the cover from the normal saline syringe. Be careful not to touch the tip of the syringe. If the tip touches anything, throw it away, and use a new one. 8. Screw the normal saline syringe onto the cap. Use a "push-stop" motion when flushing. It should flush easily. If it does not, stop, and see the "Important Tips" section at the end of this sheet for what to do. Remove the syringe, 9. Repeat steps 6 to 8 using the heparin syringe. Push stop motion is not necessary with heparin. 10. Remove the syringe. Discard both syringes into the sharps container you received. 11. Clamp the non-coring needle set.

Family Education Sheet Home Care Instructions for Flushing a Central Venous Catheter (CVC) 7. Remove the cover from the syringe(s). Be careful not to touch the tips of the syringes. If the tips touch anything, throw away, and use new ones. 8. Attach the saline syringe onto the cap. Flush using a push-stop, push-stop motion. (Your nurse will show you how to do this.) 9. Scrub the end of the CVC cap for at least 15 seconds using the second alcohol pad on the gauze. 10. Attach the heparin syringe onto the cap. Gently push the heparin solution into the cap. It should flush easily. If it does not, stop, and see the "Important Tips" section at the end of this sheet for what to do. 11. Remove the syringe and clamp the CVC. Discard in the sharps container that will be given to you. 12. Repeat steps 2 to 9 for the second lumen, if the CVC has 2 lumens. Important Tips If you feel pressure when you try to do the flush or if the CVC is hard to flush: 1. Check to be sure the line is not clamped or kinked. 2. Try the following, one at a time: raise your child's arms over the head, sit your child upright, lay your child on one side or the belly, have him or her cough or take a deep breath. Never apply force to try to do the flush. If you notice fluid leaking during the flush: 1. Check to be sure the CVC cap is on securely. 2. Inspect the line for damage. If you notice a crack or tear, clamp the CVC between the damaged area and your child's body, and call your doctor or nurse right away. If you touch the tip of the heparin flush or think you may have, throw it away and start with a new one. Keep sharps buckets and medical supplies out of the reach of children. When to Call Your Child's Doctor or Nurse Call if you: are having problems flushing the line; notice the CVC is damaged; your child has a fever of 100 F or higher; or have any questions or concerns. An Arabic and Spanish version of this is available from your provider Send comments or questions to: Familyed@childrens.harvard.edu Children s Hospital Boston, 2013 All rights reserved. Publication Date Created by page 2 of 2

Home Care Instructions for Changing the Implanted Port Tubing Cap Your child's implanted central venous catheter, called a port, has a cap at the end of the tubing which protects it from leakage and germ or air entry. It is used to insert medications and fluids your child may need. The cap is also used for routine flushes that keep the port from getting blocked. The cap should be changed every 4 days or on Monday and Thursday. Preparation 1. Prepare a clean work surface by wiping it with rubbing alcohol. For wood surfaces, put down a clean towel. 2. Gather the following items: Ø mask Ø new CVC cap Ø syringe filled with saline Ø 2-3 alcohol pads Ø 2-3 packages of sterile gauze pads Ø non-sterile gloves (optional) Ø trash bucket 3. Put on mask. 4. Wash your hands with liquid soap and water. Dry your hands with paper towels and turn off the faucet with a paper towel. Proper hand washing is very important in preventing infection. Using sterile technique will also help prevent infection. Steps 1. Tell your child what you will be doing. If your child is not able to hold still, have someone help. 2. Open the new cap package. Keep the protective end cover on. 3. Prime (or fill) cap with saline. 4. Open the packages of sterile gauze pads. Leave the pads on the inside of the package. 5. Open the alcohol prep pads (See Figure 1.) Place them on the gauze pad, touching only 1 corner of the alcohol pad. 6. Check the non-coring needle set to be sure the clamp is closed. 7. If you are using gloves, put them on. 8. Pick up the gauze pad with the alcohol pad on top. Lay the tubing with the attached cap onto the pad. 9. Scrub the connection where the old cap meets the end of the non-coring needle set tubing for at least 15 seconds. 10. Remove the old cap and discard. Scrub around the end of the tubing with a new gauze and alcohol pad for at least 15 seconds. Be careful not to touch the end of the tubing or allow it to rest on your child's body. 11. Remove the protective end cover from the new cap and screw it onto the end of the non-coring needle set. 12. Discard the old cap in the sharps container you received. Throw the rest of supplies into a trash bucket. 13. Wash your hands. 14. Ask your nurse to show you how to secure the lines with tape so they do not tug. Important Tips Clamp the tubing whenever you remove the cap. Always wash your hands before and after changing the cap. If you think you may have touched the end of the new cap, throw it away and get a new one. Gauze pad Alcohol pad Figure 1

Family Education Sheet Home Care Instructions for Changing the Central Venous Catheter (CVC) Cap 9. Scrub the connection where the cap meets the CVC hub site with the alcohol pad for at least 15 seconds before removing cap. 10. Remove the old cap and discard. Scrub the CVC hub site with a new gauze and alcohol pad for at least 15 seconds. Be careful not to touch the CVC hub site or to allow the CVC to rest on your child's body. 11. Remove the protective end cover from the new cap and screw it onto the CVC hub site. 12. If your child has a CVC with two lumens, repeat steps 8 through 11 for the second cap. 13. Discard the old CVC cap(s) in a sharps container. Throw the rest of supplies into a trash bucket. 14. Ask your nurse to show you how to secure the lines with tape so they do not tug. 15. Wash your hands. Important Tips Always clamp the CVC whenever you remove the cap. Always wash your hands before and after changing the cap. If you think you may have touched the end of the new cap, throw it away and get a new one. When to Call Your Child's Doctor or Nurse Call if: the CVC hub site is cracked or damaged; you cannot remove the old CVC cap; your child has a fever > 100 degrees; or you have any questions or concerns. An Arabic and Spanish version of this is available from your provider Send comments or questions to: Familyed@childrens.harvard.edu Children s Hospital Boston, 2013 All rights reserved. Publication Date 7/13/2010 page 2 of 2

Home Care Instructions for Removing an Implanted Port Needle Your child has an implanted port with a needle set that is used for intravenous (IV) fluids and medications. The needle must be changed at least every 7 days or after an IV treatment is finished. This sheet gives you instructions on how to remove the needle. It is very important to flush the port with normal saline and heparin before removing the needle. See Home Care Instructions for Flushing an Implanted Port. Preparation Wash your hands well with liquid soap and water. Dry your hands with paper towels. Use the paper towels to turn off the faucet. Proper handwashing is very important in preventing infection. Using sterile technique will also help prevent infection. Prepare a clean work surface. Wipe the area being used for supplies with rubbing alcohol and let it air dry. For wood surfaces, put down a clean towel. Gather the following items: Ø sterile 2" x 2" gauze pads Ø Band-Aid Steps 1. Tell your child what you will be doing. 2. Have your child lie down. If your child is not able to hold still, have someone help. 3. Remove the old dressing. Be careful not to pull on the needle or tubing. 4. Hold the port steady with the fingers on your left hand (if you are righthanded) or right hand (if you are left-handed). 5. Grasp the needle with your other hand. Remove the needle by pulling up gently and using even pressure. 6. If there is any bleeding, apply pressure with a sterile gauze pad. Then apply a small Band-Aid. A Spanish version of this is available from your provider Send comments or questions to: Familyed@childrens.harvard.edu Children's Hospital Boston Center for Families 300 Longwood Avenue Boston, MA 02115 www.childrenshospital.org Children s Hospital Boston, 2013 All rights reserved. Publication Date 1/29/2009

Traveling with Home Parenteral Nutrition (PN): Your Checklist A lot of families can travel when their child is on Home Parenteral Nutrition (PN). Sometimes they travel to Boston to come see us. Sometimes they travel for a vacation or visit family. No matter where you go, we want you and your child to have a safe and stress-free experience. Traveling on Home PN is possible; it just takes a little preparation! Here is what we suggest you do before traveling: At least 4 weeks in advance Ask your Home PN team if traveling is safe for your child. Ask your Home PN team to help find a doctor and/or hospital near where you are going in case of emergency. Ask your doctor for a letter explaining the need to travel with Home PN supplies. This might be necessary to pass through security. Notify your home care company of your travel plans. Decide if you will be bringing all your Home PN supplies, or whether they can be shipped directly to your destination. Create a list of medications that your child is taking. Notify your airline that you will be carrying supplies onboard. Make sure a refrigerator is available at your destination. You will need to call the hotel or place you are staying to find out. Day before traveling Emergency Kit Pack supplies in a cooler with cooling packs. Pack your emergency kit. You should always have an emergency kit on-hand for your child. You should always carry this kit with you whether you are traveling by plane or taking a roadtrip to visit family or just headed to a doctor s office. You never know when an emergency might happen. It s best to be prepared. Your emergency kit should contain: Hand sanitizer bottle Alcohol wipes Sterile 2x2 gauze Kelly clamps or plastic smooth tooth clamps 10 ml normal saline flushes (keep extra on-hand) (more supplies on next page) Boston Children s Hospital, 2013 All rights reserved. Publication Date 6/19/2013 page 1 of 2 #166652

Family Education Sheet Traveling with Error! Reference source not found. 5 ml 10units/ml Heparin solution flushes (keep extra on-hand) Non-sterile medical gloves (if used) Dressing change kit Tape Sterile gloves Masks Tubing for PN, IVF, and intralipid or Omegaven (if applicable) Positive pressure end caps Curos or Swab caps Batteries for pump Overnight Travel Packing Checklist When traveling overnight, you should pack the following: 2 extra days of PN bags or intravenous (IV) fluids IV hydration, if prescribed by your Home PN team Infusion pump(s) Medicines and vitamins needed to add to PN bag PN and or IV hydration tubing Y extensions Spike adapter if required (for Omegaven) Ethanol locks, if prescribed by your Home PN team Batteries for infusion pump Insurance card Contact information for your Home PN team. Pedialyte, if recommended by your Home PN team Letter for Transportation Security Administration (TSA) Plastic smooth tooth clamps or Kelly clamps Helpful Tip: You may want to put sets of items in labeled, sealable plastic bags. For example, you can put a dressing change kit with sterile gloves and masks in one bag, or alcohol pads and sterile gauze in another. A Spanish version of this education sheet is available from your provider. Boston Children s Hospital, 2013 All rights reserved. Publication Date 6/19/2013 page 2 of 2 #166652