Everyday tips

• Cover the catheter with clothing.
• Do not put the catheter in the diaper.
• Do not attach the tip of the catheter near the gastrostomy or jejunostomy (if present) as there is a risk of contamination if there is discharge from the stoma.

Bathing at the sink (or sponge bath):

• Allowed at all times.
• It is important to protect the dressing from splashing.

Shower:

• Before the catheter site is healed (up to 6 weeks after catheter insertion) AND your healthcare team has given permission OR at any time if the skin is not intact (red, broken, etc.): no showering allowed, unless otherwise directed by your healthcare team.
• When the site is well healed (approximately 6 weeks or more after catheter insertion) AND your healthcare team has given authorization: showering allowed once a day OR a minimum of three times a week with the catheter dressing covered with a second waterproof protective dressing (eg, transparent adhesive film such as Opsite® or Tegaderm®) OR with the catheter site exposed to the air.
• Change the dressing when you get out of the shower.

Bathing in the tub:

• AVOID except for infants only when the site is well healed (approximately 6 weeks or more after catheter insertion) AND your healthcare team has given permission: bathing then allowed daily OR minimum three times a week with the catheter dressing covered with a second waterproof protective dressing (eg, transparent adhesive film such as Opsite® or Tegaderm®).
• The water level in the bathtub should NEVER touch the dressing; it is important to protect it from splashing.
• When the bath is over, change the dressing.
• If the catheter dressing below the protective dressing gets wet during the bath, change it immediately.

Swimming:

• Follow your healthcare team’s instructions for swimming; they may be different depending on the child’s condition.
• Your child can swim in a private pool or in salt water (sea, ocean).
• It is not recommended that your child swim in a public pool, lake or river because there is a risk of infection at the catheter site and the possibility of peritonitis (infection inside the abdomen).
• Wrap the catheter with a 4″ by 4″ sterile compress and cover the catheter dressing with a second protective waterproof dressing (eg, Opsite® or Tegaderm® type clear adhesive film).
• Your child cannot swim if the skin around the catheter insertion site is not intact (is red, broken, etc.).
• After swimming, change the dressing.

• Maintain a regular sleep routine, appropriate to the age of your child.

• Refer to your healthcare team’s recommendations for your child’s diet. Adequate nutrition is essential to maintain your child’s health.
• Your child’s diet may require modification depending on kidney function, medications changes or other changes in your child’s health.
• Follow your healthcare team’s recommendations for food and/or fluid restriction (eg, foods with high fluid content, high salt, potassium and phosphorus).
• Discuss your child’s expected urination and stooling frequency (bowel movements) with your healthcare team.
• Kidney disease can make it hard for the kidneys to properly balance fluids in the body. Your healthcare team will help you learn how to evaluate your child’s hydration (fluid balance) and to identify if your child has: tow much fluid in the body (fluid overload), too little fluid (dehydration) or the right amount (in balance). Follow your healthcare team’s recommendation to assess hydration by:
  • knowing your child’s dry weight,
  • weighing your child at the agreed upon frequency,
  • taking your child’s blood pressure and hearth rate as requested,
  • monitoring for specifics signs of fluid overload or dehydration,
  • checking how your child is feeling in general.

• It is important that your child returns to his or her regular activities as soon as possible.
• Healing of the catheter insertion site takes several weeks (approximately 6 to 12). Some activities are not allowed during this time (eg, strenuous activity). Follow the recommendations of your healthcare team.
• When the site has healed and the care team allows it, your child should continue to avoid:
  • contact sports that may cause the catheter to move accidentally,
  • handling weights,
  • gymnastics,
  • parachute jumping and bungee jumping,
  • use of scissors near the catheter,
  • contact of pets with the equipment and the cycler;
  • swimming in a public pool, lake or river.
• Your child may return to school if he or she is well enough to do so. Notify school staff of your child’s treatment and care if necessary. Discuss your child’s return to school with your healthcare team.

• If your child requires treatment while away from home, always bring with you the necessary equipment for dialysis sessions and medication administration, including a “recovery kit” in case of complications (eg, accidental disconnection of the catheter extension). This equipment minimally contains:
  • dialysate bags,
  • the medications,
  • a cycler set with cassette,
  • drainage bags,
  • MiniCap disconnection caps,
  • a specimen bag in case of emergency,
  • the cycler in a carrying case, if necessary,
  • 4% chlorhexidine soap solution for hands,
  • alcohol-based antiseptic hand gel (eg, Stérigel®),
  • alcohol swabs or disinfectant wipes (eg, Sani-Cloth®Plus),
  • masks,
  • syringes and needles, if necessary,
  • disinfectant swabs (2% chlorhexidine and 70% alcohol or 70% alcohol only, as directed by your healthcare team),
  • dialysis clamp,
  • sterile compresses,
  • materials for changing the dressing,
  • adhesive tape,
  • table to perform dialysis (optional).

• Always have an up-to-date list of materials and equipment needed for travel so that you can replace missing items, if necessary.
• Have a resource list available with the names and phone numbers of the hospital, your doctor, other members of your healthcare team and your equipment and materials suppliers. Also know how to reach them after hours and during vacations.
• Before you leave on your trip:
  • contact your healthcare team to plan ahead for equipment needs during the trip;
  • check to see if the appropriate voltage for the cycler is available at your destination, if necessary;
  • always check with your insurance company to see if out-of-country health care needs are covered;
  • make sure you have a document from your healthcare team describing your child’s medical condition and peritoneal dialysis needs, as well as a list of your child’s medications;
  • have the specifics of your child’s cycler and equipment available;
  • in collaboration with your healthcare team, find out what resources may be required during the trip or at the destination, if you run out of equipment, if there is an equipment breakdown or a special health need;
  • plan what to do in case of an emergency.
• For travel by airplane:
  • discuss with your healthcare team the need to move the cycler or the possibility of having one at your destination;
  • discuss with the airline what equipment is allowed in the cargo hold and in the cabin of the plane;
  • keep medications and documentation from your healthcare team with you in the cabin.

Monitoring the catheter site:

• It is important to keep the catheter securely in place with minimal movement to avoid injury around the insertion site and to prevent infection.
• Thoroughly clean the catheter insertion site as recommended by your healthcare team.
• Check the skin around the catheter site carefully. Detecting a problem as soon as it occurs can prevent the need to change the catheter. Notify your healthcare team immediately if you notice any of these symptoms: redness, swelling, discharge and/or pain.

Monitoring weight:

• Dry weight (or ideal “healthy weight” for the child) is the weight on the scale when your child has the right amount of water in his or her body, has normal blood pressure, no swelling, no difficulty breathing and is feeling well. Your healthcare team will help you determine your child’s dry weight at each appointment.
• Weigh your child at the same time each day, morning and night. If he or she is receiving treatment by cycler, weigh your child each night before treatment and each morning after treatment, with comparable clothing.
• Use a scale, specific to the nearest 0.2 kg if possible (more accurate). Record these measurements in a logbook and compare them with your child’s dry weight.
• Rapid weight gain or loss can mean that your child has too much or too little fluid in his or her body. The healthcare team will use the results of the logbook to adjust treatment as needed. Contact your healthcare team if there is a change in weight between appointments.
• Follow your healthcare team’s instructions if your child’s weight changes. They may recommend using more or less concentrated glucose solutions, adjusting hydration or salt intake.
• If recommended by your your child’s healthcare team, use dialysis solutions based on a weight scale developed for your child.

Blood pressure monitoring:

• Take your child’s blood pressure and pulse rate as instructed by your healthcare team: after the dialysis session in the morning upon waking up, three minutes afterwards in a sitting position (unless your child is an infant) and at night before the session.
• Use the machine recommended by your healthcare team. If you are unsure of the results and if you have been taught, take a manual blood pressure. An increase in blood pressure may mean that your child has fluid overload. A decrease in blood pressure may mean that your child is dehydrated. In these circumstances, contact your healthcare team.
• Take the blood pressure at the same time you take the weight.

Ultrafiltration:

• Note the ultrafiltration result on the cycler screen in the register in the morning, at the end of each treatment.

Storage of dialysate bags:

• The dialysate bag, when removed from its packaging and mixed, should be used within 24 hours. Discard any unused solution after the dialysis session.
• Store boxes of dialysate bags anywhere in the house, in the same clean location, at a temperature between 15⁰C and 25⁰C; do not store them in an unheated area (eg, garage). Rotate; use the old ones before the new ones.

Storage of equipment:

• Keep materials in a desk, drawers, or cabinet free of dust and dirt.

Frequency of equipment replacement: Follow your healthcare team’s recommendations on how often to change the equipment used. Here are some general recommendations:

• Dialysate bag: discard after use;
• Cycler set with cassette, drainage bag and specimen bag: discard after use;
• Extension: replaced by your healthcare team every six months or more often if needed (eg, contamination, peritonitis);
• MiniCap disconnect cap: put a new one on every morning after treatment;
• Syringes and needles: discard after use.

Cycler care: Clean the outside of the cycler as needed with a disinfectant wipe (eg, Sani-Cloth® Plus) or a damp cloth. Do not use aerosol sprays.

Waste Management: Most waste generated in the home can be safely disposed of with the regular garbage.

• Empty any fluid remaining in the tubing and dialysis bags into the sink, toilet or bathtub drain.
• Empty the contents of the drainage bags into the toilet.
• Unscrew the capped needles from the syringes. Dispose of syringe needles in a sharps container. Refer to your healthcare team for instructions on how to dispose of the container when full.
• Place all non-recyclable materials (eg, dialysate bags, tubing, other waste) in a waste bag and seal it tightly before putting it in the trash.
• The dialysate boxes can be recycled.

Medications:

• All medications should be given to your child as directed by your healthcare team. This is especially important since his or her kidneys are no longer functioning properly.
• Different medications may be recommended for your child:
  • phosphorus binder: prevents phosphorus from building up in the blood. Usually, healthy kidneys remove excess phosphorus in the urine. When the kidneys are not working well, phosphorus builds up in the blood. High levels of phosphorus in the blood can lead to a decrease in calcium, which can cause brittle and weak bones. Phosphorus binders bind (“stick to”) the phosphorus in food so that it is eliminated in the stool.
  • erythropoietin: helps make red blood cells. Healthy kidneys make this hormone that stimulates the bone marrow to make red blood cells. When the kidneys don’t work properly, your child doesn’t have enough red blood cells and can become anemic, which causes fatigue and lack of energy.
  • other medications: vitamin D, calcitriol (active vitamin D), laxative, iron, heparin, antihypertensive, etc.
• Your healthcare team will recommend the type and dose of medication your child needs.
• Some medications may be added to the dialysate bags.
• Be sure to follow the medication schedule.
• Never give your child over-the-counter medications without discussing first with your healthcare team.

Emergency situations:

• Make sure you always have a MiniCap disconnect cap, dialysis catheter clamp available in case of accidental disconnection of the catheter extension.
• Always have a phone on hand to respond to an emergency. Make sure your cell phone is charged at all times.
• If the power goes out for more than two hours, contact your healthcare team to discuss alternative scenarios to the usual treatment.
• Have a copy of your child’s medication list available and keep extra supplies on hand.
• Make sure you have dialysis supplies (eg, dialysate bags, all equipment for the cycler) for at least seven days of treatment.
• Have a resource list available with the names and phone numbers of the hospital, your doctor, other members of your healthcare team, and your equipment and materials suppliers. Also know how to reach these resources after hours and during vacations.
• In any other emergency situation, contact your healthcare team.

Infection prevention:

• A healthy child has a better resistance to infections. Healthy lifestyle habits (eg, good nutrition, physical activity, rest, etc.) help your child fight infections.
• A child on peritoneal dialysis must take great care because kidney disease reduces the child’s resistance to infection.
• The presence of a catheter in the belly can allow bacteria to enter the abdomen and cause infections, like peritonitis. It is important to keep the catheter insertion site clean and dry.
• You can minimize infections by following aseptic measures which decrease the number of microbes (bacteria) on surfaces. These measures are:
  • Cleanliness: Personal hygiene and environmental cleanliness are the first ways you can reduce microbes (eg, wearing clean clothes, washing your hands with soapy water for at least 20 seconds, cleaning the work table, keeping the dialysis room clean, etc.). Many microbes are eliminated by cleanliness, but not all.
  • Disinfection: This action removes even more microbes. Before each dialysis treatment, you should disinfect work surfaces (eg, clean the top of the work table with an alcohol solution or a disinfectant wipe and wash your hands).
  • Sterilization: This action kills all microbes. Some items or solutions used in dialysis are packaged to ensure sterility. You do not have to sterilize anything, but you must remember that some parts of the equipment must remain sterile after you remove them from the package. You cannot touch them with your fingers, even if they are disinfected, because you will contaminate them. For example, never touch the sterile end of the catheter extension with your fingers or anything that comes in contact with the dialysis solutions (eg, syringe needle for injecting medication).
• Specific routines, related to these aseptic measures, must be performed before each care, to minimize the risk of infection in your child. These are basic procedures to be performed, as taught by your healthcare team:
  1. Wash your hands with soapy water for at least 20 seconds.
  2. Dry your hands well with a clean paper or towel.
  3. Close the tap with the paper or towel.
  4. Close doors and windows or the ventilation system during treatment to avoid drafts.
  5. Wash your work surfaces with alcohol or a disinfectant wipe (eg, Sani-Cloth® Plus).
  6. Let the table dry.
  7. Gather and inspect materials.
  8. Put on a mask.
  9. Remove jewelry.
  10. Wash your hands with a 4% chlorhexidine soap solution for 2 minutes.
  11. Dry your hands well with a clean paper or towel.
  12. Close the tap with the paper or towel.
• Do not touch anything after washing your hands with the chlorhexidine soap solution, except for the care equipment. If you touch something by mistake other than the dialysis equipment, apply an alcohol-based antiseptic gel (eg, Stérigel®) to the entire surface of your hands and rub until your hands are dry (20 to 30 seconds).
• If you think you have contaminated a sterile part, don’t take a chance. Most of the equipment you use is disposable. Throw away any item that is or may have been contaminated and start over. It is safer for your child and cheaper to throw away equipment than to treat an infection.
• If the catheter is broken or if there is contamination of the extension, contact your healthcare team immediately.
• Keep all dialysis equipment in a clean place.
• Do not provide care near an air conditioner and stay away from drafts.
• Do not allow pets in the room during treatment.
• Clean the catheter insertion site daily or at least three times a week to prevent infection.
• Your child will need to take antibiotics before certain procedures (eg, dental work, cystoscopy, colonoscopy, etc.). These procedures can cause bleeding and give bacteria access to the bloodstream. Bacteria can contaminate the catheter and cause an infection. Notify your healthcare team of any dental appointments or invasive tests or exams.
• Protect the venous access of your child’s non-dominant arm; this will facilitate hemodialysis treatments should he or she ever need them.

Daycare and school:

• Your child’s healthcare team will evaluate your child’s needs and will support you in the planning of integration to daycare or to school.
• Advise school staff of the treatment and care that your child requires.

Additional information and tips can be found on the following sites:

http://kidney.ca (Kidney Foundation of Canada)

https://www.agir.ca (Association générale des insuffisants rénaux): in French only