PLEASE NOTE: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team. 

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

General state of health

When your child has any of the following symptoms:

• Fever (≥ 38⁰C rectal or ≥ 5⁰C oral or ≥ 37.5⁰C armpit).
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy).
• Signs and/or symptoms of breathing difficulties:
  • Short of breath, trouble breathing or noisy breathing,
  • Breathes more quickly,
  • Chest pain,
  • Coughs more than usual or weaker cough,
  • Heart rate faster than usual,
  • Chest retraction and/or nasal flaring,
  • Oxygen saturation monitor indicates that your child has a decreased oxygen saturation compared to their normal values,
  • Purple or gray lips, tongue or fingertips (cyanosis),
  • Clammy skin\cold extremities,
  • Changes to behavior either fatigue or irritability,
  • More comfortable breathing when sitting up,
  • Extends their neck and head backwards to take in a breath.
• Signs and/or symptoms of dehydration:
  • Decreased urination
  • Increased thirst
  • Dry lips and mouth
  • Faster heart rate than usual
  • Weight loss
• Your child experiences severe dizziness that lasts after 2 consecutive sessions of cough assist.
• Your child’s abdomen remains bloated and/or your child burps after lung volume recruitment technique or insufflation/exsufflation technique.

Respiration/respiratory muscles

• Your child experiences chest/abdominal pain during lung volume recruitment technique or manual thrusts.
• You are unable to clear your child’s secretions.
• Your child’s abdomen does not move outwards during lung volume recruitment technique or insufflation/exsufflation technique.

Equipment

• A leak around the mouthpiece or through the nose that persists during lung volume recruitment technique or insufflation/exsufflation technique.

Health

• Your child experiences severe dizziness that lasts after 2 consecutive sessions of cough assist.
• Your child’s abdomen remains bloated and/or your child burps after lung volume recruitment technique or insufflation/exsufflation technique

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment. Adjustments will be made as required.

WARNING: The information in this section is meant as a general guide for parents and caregivers with certain problems related to children with tracheostomy using a simple non-fenestrated, cuffless tracheal cannula. It is not intended to replace the recommendations of your child’s healthcare team.

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

General state of health

When your child has any of the following symptoms:

• Fever (≥ 38⁰C rectal or ≥ 37.5⁰C oral or ≥ 37.5⁰C armpit).
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy).
• Signs and/or symptoms of breathing difficulties:
  • Short of breath, trouble breathing or noisy breathing,
  • Breathes more quickly,
  • Chest pain,
  • Coughs more than usual or weaker cough,
  • Heart rate faster than usual,
  • Chest retraction and/or nasal flaring,
  • Oxygen saturation monitor indicates that your child has a decreased oxygen saturation compared to their normal values,
  • Purple or gray lips, tongue or fingertips (cyanosis),
  • Clammy skin\cold extremities,
  • Changes to behavior either fatigue or irritability,
  • More comfortable breathing when sitting up,
  • Extends their neck and head backwards to take in a breath.
• Signs and/or symptoms of dehydration:
  • Decreased urination,
  • Increased thirst,
  • Dry lips and mouth,
  • Faster heart rate than usual.

Secretions

The secretions:

• have different colour (yellow, green, pink or blood-tinged secretions) or contain blood.
• are thicker.
• are more than usual and need to be suctioned more frequently.
• are foul smelling.
• have presence of traces of food when suctioned.
• are more during or after meals.
• look like recently ingested liquids or foods.

Tracheal cannula

• Insertion of a new cannula is difficult or impossible.
• The cannula is partially or completely out.

Tracheostomy

• Bleeding in or around the tracheostomy.
• Water has entered the tracheostomy.
• Skin around the tracheostomy is irritated.
• Dressing is wet or soiled with blood.
• The skin on the neck is irritated.

Feedings

Your child:

• coughs or chokes often when eating.
• has trouble eating or drinking.
• has a poor appetite and refuses to eat.
• vomits during or right after meals.

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment. Adjustments will be made as required.

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

WARNING: The information in this section is meant as a general guide for parents and caregivers with certain problems related to aspiration of secretions. It is not intended to replace the recommendations of your child’s healthcare team.

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

General state of health

When your child has any of the following symptoms:

• Fever (≥ 38⁰C rectal or ≥ 5⁰C oral or ≥ 37.5⁰C armpit)
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy)
• Signs and/or symptoms of breathing difficulties:
  • Short of breath, trouble breathing or noisy breathing,
  • Breathes more quickly,
  • Chest pain,
  • Coughs more than usual or weaker cough,
  • Heart rate faster than usual,
  • Chest retraction and/or nasal flaring,
  • Oxygen saturation monitor indicates that your child has a decreased oxygen saturation compared to their normal values,
  • Purple or gray lips, tongue or fingertips (cyanosis),
  • Clammy skin\cold extremities,
  • Changes to behavior either fatigue or irritability,
  • More comfortable breathing when sitting up,
  • Extends their neck and head backwards to take in a breath.
• Signs and/or symptoms of dehydration:
  • Decreased urination,
  • Increased thirst,
  • Dry lips and mouth,
  • Faster heart rate than usual,
  • Weight loss.

Secretions

• Secretions are blood-tinged, bloody or red coloured.

During suctioning

• Aspiration of secretions is difficult or impossible.
• Insertion of the aspiration catheter is difficult or impossible.
• Your child vomits during aspiration of secretions.
• Your child’s nose starts to bleed after nasopharyngeal aspiration of secretions.
• Your child coughs without stopping after nasopharyngeal or tracheobronchial aspiration of secretions.

Equipment

• The suction machine is excessively noisy.
• The suction machine does not work.

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment. Adjustments will be made as required.

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

WARNING: The information in this section is meant as a general guide for parents and caregivers with certain problems related to invasive ventilation, non-invasive ventilation and manual ventilation. It is not intended to replace the recommendations of your child’s healthcare team.

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

General state of health

When your child has any of the following symptoms:

• Fever (≥ 38⁰C rectal or ≥ 5⁰C oral or ≥ 37.5⁰C armpit).
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy).
• Signs and/or symptoms of breathing difficulties:
  • Short of breath, trouble breathing or noisy breathing,
  • Breathes more quickly,
  • Chest pain,
  • Coughs more than usual or weaker cough,
  • Heart rate faster than usual,
  • Chest retraction and/or nasal flaring,
  • Oxygen saturation monitor indicates that your child has a decreased oxygen saturation compared to their normal values,
  • Purple or gray lips, tongue or fingertips (cyanosis),
  • Clammy skin\cold extremities,
  • Changes to behavior either fatigue or irritability,
  • More comfortable breathing when sitting up,
  • Extends their neck and head backwards to take in a breath.
• Signs and/or symptoms of dehydration:
  • Decreased urination
  • Increased thirst
  • Dry lips and mouth
  • Faster heart rate than usual
  • Weight loss
• Difficulty adapting to the ventilator assistance and to coordinate breathing with the device.
• Agitated, crying or uncomfortable with the ventilatory assistance and/or has difficulty falling asleep.
• Abdomen remains distended.
• Vomits during manual ventilation.
• Difficulty speaking or swallowing during non-invasive ventilation.
• Other problems during or after ventilatory assistance.

Mask

• Your child remains uncomfortable while wearing the mask.
• The skin of the face, nose or the eyes is red or irritated.
• Your child’s nose and/or mouth remain dry.
• Your child’s nose and sinuses remain congested.
• Your child’s eyes remain irritated or red.

Ventilation circuit

• Interface or a part of the ventilation circuit is broken (eg, tubing, tracheostomy adapter).
• Water condensation persists in the circuit and/or mask and/or water continues to accumulate in the tubing of the circuit.
• The air in the circuit remains more warm than usual.

Ventilatory assistance device and humidifier

• Any alarm persists.
• The device does not operate.
• The flow of air from the device remains insufficient.
• The screen on the device continues to be irregular.
• The water chamber is damaged or broken.
• The device continues to push air more forcefully than usual.
• The device operates with more noise than usual.

Ventilatory bag

• The ventilatory bag does not function, despite your attempts to resolve the problem.

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment. Adjustments will be made as required.

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

WARNING: The information in this section is meant as a general guide for parents and caregivers of children with certain problems related to peritoneal dialysis. It is not intended to replace the recommendations of your child’s healthcare team.

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

General state of healthcondition

When your child has any of the following symptoms:

• Fever (≥ 38^oC rectal or ≥ 37.5^oC oral or ≥ 37.5^oC armpit)
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy)
• Signs and/or symptoms of dehydration:
  • Rapid weight loss compared to child’s dry weight
  • Dizziness
  • Less saliva, dry lips
  • Low blood pressure (Hypotension)
  • Orthostatic low blood pressure
  • Increased heart rate
  • Muscle cramps, especially in the legs
  • Weakness
• Symptoms of fluid overload:
  • Rapid increase in weight compared to child’s dry weight
  • Swelling of the hands, ankles and feet
  • Swelling around the eyes and/or face
  • High blood pressure (Hypertension)
  • Difficulty breathing
  • Shortness of breath
  • Low urine output
• Difficulty controlling blood pressure
• More frequent and/or larger volume of stools (diarrhea)
• Infection
• Persistent problems (eg, shoulder pain, abdominal cramps during drainage, constipation, itching, restless legs)

Peritoneal catheter

• Discharge, redness, heat, swelling, bad odor and/or pain around the catheter insertion site
• Bump or red line near the catheter insertion site (on the skin covering the catheter tunnel) with redness, swelling, pain or tenderness and/or discharge
• Leakage at the catheter insertion site
• Catheter breakage
• Visible external catheter cuff (displacement of the catheter)

Equipment for peritoneal dialysis

• Partial or complete disconnection between the extension and the catheter
• Partial or complete disconnection between patient line and extension tubing during dialysis
• Disconnection between MiniCap disconnect cap and extension tubing
• Contamination of extension tip during dialysis preparation
• Suspected contamination (eg, during connection, disconnection, medication preparation, etc.)
• Problem with the cycler alarm that you are unable to resolve
• Leaking out of the bag during the dialysis session

Peritoneal dialysis sessions

• Pink or red effluent
• White filaments or small pieces in the effluent
• Cloudy effluent
• Decrease in ultrafiltration/decreased effluent
• Frequent cycler alarms during dialysis treatment
• Increase or decrease in weight relative to child’s dry weight, as determined by your healthcare team

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment.  Adjustments will be made as required. 

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team. 

Discuss your child’s unique needs with your healthcare team, including WHO and WHEN to contact when problems arise.

Equipment

• You are having difficulties with the equipment.
• There is an ongoing leakage.

Skin around the stoma

• The skin is irritated (eg, redness, red bumps, small injuries, itching, burning), and you have not been able to resolve the problem.

Stoma

• The stoma changes color for more than a few minutes.
• The stoma has sunk in or sticks out more than 0.5 cm from its usual position.
• There is bleeding (more than a few drops).

Stool

• The amount of stool has increased or decreased more than usual, for more than a day and for no apparent reason.
• Your child has persistent diarrhea (more water loss in the stool).

General state of health

• Your child has abdominal pain or swelling.
• Your child has signs of dehydration:
  • less frequent urination (wet diapers) /more concentrated (dark yellow) urine;
  • dry lips and mouth;
  • sunken eyes;
  • headache, feeling faint, dizzy or tired;
  • faster heart rate.
• Your child has nausea, vomiting or unexplained pain.
• Your child has a fever (≥ 38⁰C rectal or ≥ 37.5⁰C oral or ≥ 37.5⁰C armpit).

Do not hesitate to contact your enterostomal therapy nurse or your healthcare team with any specific questions concerning your child.

WARNING: The information in this section is meant as a general guide for parents and caregivers with certain problems related to enteral nutrition. It is not intended to replace the recommendations of your child’s healthcare team.

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

NOTE: For ease of reading the rest of the text, the word (nutritional) “formula” also includes “breast milk”, “fortified breast milk” or “infant formula”.

Nasal tube

• Persistent recurrent nasal tube blockage.
• Problem with a nasoduodenal or nasojejunal tube (eg, breakage, accidental removal or displacement).
• Inability to insert the nasogastric tube, despite your interventions.
• Persistent redness around the nostril.
• Bleeding in the gastric aspirates.

Stoma

• Skin near the stoma is red, sensitive, warm, swollen, has a bad odor, with the presence of discharge different from the usual yellowish or brownish secretions.
• Presence of moist, thick, red crusts on the skin around the stoma.
• Bloody discharge through or around the stoma.
• Persistent fluid discharge around the stoma.
• Inability to insert a urinary Foley™ catheter through the stoma.

Button and enterostomy long tube

• Problem related to a stoma that has been in place for less than 6 to 8 weeks (or other length of time as recommended by your healthcare team).
• Persistent blockage of the button or enterostomy long tube.
• Malfunction of the balloon button or enterostomy long tube (eg, inability to deflate balloon, inability to rotate the button).
• Problem with a non-balloon button, a gastrojejunal button or enterostomy long tube (eg, malfunction, breakage, displacement, leakage of liquid around it, blockage or accidental removal).
• Inability to insert the gastrostomy balloon button or tube despite your interventions.
• Bleeding in the gastric aspirates.

Feeding sessions

• Sudden onset of respiratory distress during a feeding session (EMERGENCY).
• Persistent nausea and/or vomiting during or between feeding sessions.
• Persistent bloating and swelling of the belly.
• Persistent abdominal pain during feeding sessions.
• Presence of yellowish or greenish liquid in the feeding tube.
• Persistent problem with the pump (eg, alarms) or equipment, despite your interventions.

General condition

• Fever (≥ 38⁰C rectal or ≥ 37.5⁰C oral or ≥ 37.5⁰C armpit).
• Yellowish or greenish vomiting.
• Persistent nausea and vomiting between feeding sessions.
• Persistent bloating and swelling of the belly between feeding sessions.
• Signs of dehydration: increased thirst, dry and sticky tongue, dry and chapped lips, dark urine with strong odor and in small quantities.
• Diarrhea with the presence of blood and/or fever.
• Persistent diarrhea.
• Persistent constipation.
• Signs of fluid overload: difficulty breathing, swelling in the legs, feet and eye area, sudden rapid weight gain.
• Signs of hypoglycemia between feeding sessions: chest pain, vomiting, headache, blurred vision, sweating, pallor, fatigue or irritability, tremors, convulsions.
• Signs of hyperglycemia during and/or after the feeding session: headache, chest pain, severe thirst, weakness, agitation, irritability, abdominal cramps, diarrhea, urinating more often than usual, dizziness.

Your child’s healthcare team will use your child’s regular appointments to verify the proper functioning of the enteral nutrition equipment, to answer your questions and to make adjustments to the care as required.

Do not hesitate to contact your healthcare team with any specific questions concerning your child.

WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team. 

Discuss your child’s unique needs with the healthcare team, including WHO and WHEN to contact when problems arise.

Intravenous catheter

• The catheter entry site is red, swollen, hot or painful.
• There is redness or itching of the skin under the dressing.
• There is, redness, sensitivity or a cord-like feeling along the vein where the catheter is inserted.
• The skin is cold around the entrance site of the catheter and your child complains about burning or pain at this location; there is swelling of the arm.
• Swelling of the arm (PICC line).
• Child with an implantable chamber catheter (eg, Port-a-Cath®): pain or swelling at the site of insertion of the reservoir during the administration of the solution or irrigation.
• There is bleeding or other leakage at the entrance site of the catheter.
• The color of the skin is pale or red around the entrance site of the catheter.
• Irrigation/flushing of the catheter is difficult or impossible.
• The length of the external portion of the catheter has changed or the catheter is partially or completely removed from the vein.
• The catheter is broken.
• Your child hears an unusual sound during irrigation of the catheter.

Equipment for administering the nutrient solution

• There is more residual solution than usual in the bag at the end of administration.
• The bag contains more air bubbles than usual or particles, whether the additives have already been added or not.
• The solution is separated (before or during administration) after mixing the contents of both chambers.
• The needleless connector or tubing of the pump is disconnected.
• A piece of equipment is broken.
• You are unable to operate the ambulatory infusion pump correctly or to correct problems related to the alarms.
• The ambulatory infusion pump screen is broken or displayed incorrectly.

Dressing

• It is damp or soiled with pus or other discharge.
• It is peeled off, punctured or torn.

Health

Your child:

• has fever (≥ 38⁰C rectal or ≥ 37.5⁰C buccal or ≥ 37.5⁰C armpit).
• has a sore ear, throat, neck or shoulder on the side where the central catheter is inserted.
• smells a particular odor or has a strange taste in the mouth during irrigation of the catheter.
• hears an unusual sound on the side of the catheter during irrigation.
• on the side of the catheter, has swelling in the hand, arm, neck or face
• has pain in the armpit (under the arm) where the catheter is located.
• appears unwell (eg, pain, irritability, loss of appetite, drowsiness, etc).
• has a change in baseline health with new symptoms (eg, pain, chills, blood in the stool, vomiting with blood, irritability, agitation, blurred vision, fatigue, weakness, drowsiness, nausea, headache, increased thirst, decreased urination, body swelling, sweating, faster breathing, difficulty breathing, dry skin, dry mouth, etc).
• has more frequent or larger volume liquid stools (diarrhea) than usual.

Your child’s healthcare team will use your child’s regular appointments to verify the proper functioning of the catheter and parenteral nutrition equipment and will make adjustments to the care as required.

Do not hesitate to contact your healthcare team with any specific questions concerning your child.

WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team. 

Discuss your child’s unique needs with your healthcare team, including WHO and WHEN to contact when problems arise.

General state of health

When your child has any of the following symptoms:

• Fever (≥ 38⁰C rectal or ≥ 37.5⁰C buccal or ≥ 37.5⁰C armpit).
• General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy).
• Signs and/or symptoms of dehydration:
  • Decreased urination,
  • Increased thirst,
  • Dry lips and mouth,
  • Faster heart rate than usual,
  • Weight loss.

Intravenous catheter

• The catheter entry site is red, swollen, hot or painful.
• There is bleeding or other leakage at the entrance site of the catheter.
• The color of the skin is pale or red around the entrance site of the catheter.
• The skin around the entrance site of the catheter is cold or your child reports burning or pain at this location.
• The length of the external portion of the catheter has changed (length is shorter or longer than usual) or the catheter is completely removed from the vein.
• There is redness or itching of the skin under the dressing.
• The dressing is damp or soiled with pus or other discharge.
• The dressing is peeled off, punctured or torn.
• There is redness, sensitivity or a cord-like feeling along the vein where the catheter is inserted.
• Irrigation/flushing of the catheter is difficult or impossible.
• The catheter is broken.
• If your child has an implantable chamber catheter (eg, Port-a-Cath®): pain or swelling at the site of insertion of the reservoir during the administration of the solution or irrigation.
• Your child:
  • complains of pain in the ear, throat, neck, armpit or shoulder on the same side of the catheter;
  • smells a particular odor or has a strange taste in their mouth during irrigation of the catheter;
  • hears an unusual sound during irrigation of the catheter or administration of medication;
  • has swelling in the neck, face or the arm on the same side as the catheter.

Equipment for administering the medication

• The medication bag, cassette reservoir or balloon reservoir contains air bubbles or particles.
• Medication takes longer than usual to administer, and you cannot solve the issue.
• There is more solution left than expected in the medication bag/cassette reservoir at the end of administration.
• There is more solution left than expected in the balloon reservoir at the end of administration (the balloon should be empty, flattened and small ridges visible).
• The needleless connector or extension tubing is broken or inadvertently disconnected.
• A piece of equipment is broken.
• You are unable to operate the ambulatory infusion pump correctly or to correct problems related to the alarms.
• The ambulatory infusion pump screen is broken or displayed incorrectly.

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment.  Adjustments will be made as required.

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team.

Discuss your child’s unique needs with your healthcare team, including WHO and WHEN to contact when problems arise.

Urine

• The amount of urine collected by catheterization increases or decreases much more than usual, for more than a day and for no apparent reason.
• Urine changes color, appearance or smells bad as compared to what is normal for your child.
• There is no flow of urine through the catheter for a longer period of time than what has been recommended by the healthcare team.
• The flow of urine through the catheter is much slower.
• Your child has urinary incontinence between catheterizations.

Catheterization

• You are unable to insert or remove the catheter.
• The stoma is bleeding more than a few drops and does not stop.

Mitrofanoff stoma

• The skin around the stoma is red or irritated (small bumps or skin injury).
• The stoma changes appearance.
• The stoma protrudes or sinks in more than 0.5 cm.

General state

When your child has any of the following symptoms or signs:

• tummy pain,
• your child has a stomach ache and feels uncomfortable,
• frequency: feeling the urge to pee more often,
• fever (rectal ≥ 38⁰C or oral/armpit ≥ 37.5⁰C),
• nausea or vomiting,
• dysuria: pain when passing urine,
• general irritability, poor appetite, tiredness or wanting to sleep more than usual.

Do not hesitate to contact your healthcare team about any questions concerning your child.