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Preparing for Your Child’s Discharge and Follow-up
Stollery Congenital Heart Program Information for Children Who Have Had Heart Surgery at the Stollery Children’s Hospital REVISED APRIL 2018
Preparing for Your Child’s Discharge and Follow-up 1
Table of Contents
4
HEADING HOME
22
ACTIVITY PRECAUTIONS
Heading Home . . . . . . . . . . . . . . . . . 5
Thoracotomy Precautions . . . . . . . . 23
When will my Child be Ready for Discharge? . . . . . . . . . . . . . . . . . 5
Sternal Precautions . . . . . . . . . . . . 24
Care by Parent Program . . . . . . . . . . 7 My Care Team Worksheet . . . . . . . . . 8
10
WHAT TO EXPECT
26
DISCHARGE TEACHING
Incision and Wound Care . . . . . . . . 27 When Discharge Teaching is Complex . . . . . . . . . . . . . . . . . . . 30
What to Expect at Home After Surgery . . . . . . . . . . . . . . . . . 11
Cardiopulmonary Resuscitation (CPR) . . . . . . . . . . . . 31
Post-Op Follow-Up . . . . . . . . . . . . . 14
Infective Endocarditis . . . . . . . . . . . 32 Signs and Symptoms of Heart Failure . . . . . . . . . . . . . . . . . . 33
16
PAIN MANAGEMENT
Pain Management . . . . . . . . . . . . . 17
2 Stollery Congenital Heart Program
When to Call for Help . . . . . . . . . . . 34
36
48
LOOKING AHEAD
RESOURCES
Learning and Development . . . . . . . 37
Resources . . . . . . . . . . . . . . . . . . . 49
Ongoing Care . . . . . . . . . . . . . . . . . 38
Walter C. Mackenzie Health Sciences Centre Maps . . . . . . . . . . 52
For Teens . . . . . . . . . . . . . . . . . . . . 38 Adult Congenital Cardiology and Lifelong Follow-Up . . . . . . . . . . 39
42
Contact Information . . . . . . . . . . . . 54
COPING, SUPPORT AND GETTING INVOLVED
Caring for the Caregiver . . . . . . . . . 43 Getting Involved . . . . . . . . . . . . . . . 45
Copyright © (2018) Alberta Health Services. This material is protected by Canadian and other international copyright laws. All rights reserved. This material may not be copied, published, distributed or reproduced in any way in whole or in part without the express written permission of Alberta Health Services (please contact The Stollery Congenital Heart Program at 780-407-3952). This material is intended for general information only and is provided on an “as is”, “where is” basis. Although reasonable efforts were made to confirm the accuracy of the information, Alberta Health Services does not make any representation or warranty, express, implied or statutory, as to the accuracy, reliability, completeness, applicability or fitness for a particular purpose of such information. This material is not a substitute for the advice of a qualified health professional. Alberta Health Services expressly disclaims all liability for the use of these materials, and for any claims, actions, demands or suits arising from such use.
Preparing for Your Child’s Discharge and Follow-up 3
Heading Home
4 Stollery Congenital Heart Program
HEADING HOME
Heading Home Getting ready to leave the hospital can be both exciting and a little scary. As your child’s hospital discharge approaches, we want you to feel prepared and empowered with the information and resources you need to ensure a smooth continuation of care and recovery. Your healthcare team will work closely with you to make this possible. Your team will work with you to start planning for your child’s discharge at admission. Throughout your
stay various members of your team will speak with you to discuss your discharge instructions. There can be many details to remember when you are preparing to take your child home. While your healthcare team will take time to carefully review your child’s treatment plan, medications and supplies, and follow-up appointments, it is helpful to have a checklist of reminders. You may find it helpful to use this book as a guide. Take notes, ask questions, get involved!
When will my Child be Ready for Discharge? The length of time a child stays in hospital after surgery depends on many different things. There is no standard length of time a child is required to stay. Instead, children are monitored over time to see when they meet a given set of criteria which tell the medical team that they are safe and ready to move back home again. Generally, children and babies are ready for discharge when the following criteria are met: • Pacing wires, chest tubes, and other tubes/IV lines have been removed • Your child’s vital signs are within the guidelines recommended for their age and underlying cardiac condition • Your child has been off oxygen for at least 12 hours or a home regimen has been established
• Your child is feeding orally and/ or when the home nutrition program has met with you and you feel comfortable to do tube feeds at home • A plan for follow-up has been created
Preparing for Your Child’s Discharge and Follow-up 5
Sometimes, exceptions to discharge criteria are made. For example: • Some children require oxygen or other forms of respiratory support at home
• Some children may go home with a wound drain
If there is an exception specific to you, your Doctor and the care team will work with you to create a plan to care for your child at home. You will be given specific instructions and your child will not be discharged from hospital until you are comfortable with the plans and activities recommended by your medical team.
Discharge papers you will receive Discharge Instructions
Medical Summary of Hospitalization
Medication Reconciliation (Prescription)
Blood Bank Tags
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Done
Not Required
Done
Not Required
Discharge Nurse Review heart anatomy and surgeries Review bedside assessment and symptoms to watch for 24 hours of Total Care by Parent at the bedside Dietitian Will provide guidance specific to your child’s needs. This may include feed mixing recipe, schedule, and volumes NG Tube Feed Teaching (if needed) Home Nutrition Program will teach how to use the NG tube for feeds and medications, as well as how to reinsert the tube when needed Pharmacist Will provide all medication teaching necessary including a medication schedule Stethoscope Teaching (if needed) This teaching is provided to families of babies who have certain heart rhythm abnormalities
CPR Class
Other:
Preparing for Your Child’s Discharge and Follow-up 7
HEADING HOME
Discharge Teaching Checklist
Care by Parent Program You are not alone! Families do not leave the hospital until they feel comfortable and ready to care for their child at home. We have a program to help. It is called “Care by Parent”. This program uses a phased approach to support families as they learn to care for their child with confidence, comfort, and independence. Your Doctor or Nurse Practitioner will assess which level of care is best for you each morning at rounds based on where you are in the discharge process. This way, your Nurses will know exactly how much teaching, modeling, prompting and encouragement you need in order to advance to the next level. The ordering guidelines for Care by Parent are: Level One: Total Care by Nurse • Ordered when caregiver(s) are brand new to the unit or for respite when they are in need of sleep or a break Level Two: Medical Care by Nurse/Personal Care by Parent • Ordered when caregiver(s) have not learned medical skills but would benefit from hands on time with their child
• This is started as soon as a child is out of the intensive care unit
Level Three: Partial Care by Parent • Ordered once caregiver teaching has started • Specifies what new skills have been introduced to the caregiver(s) that require practice
• Nurses encourage the caregiver(s) to practice as often as possible, offer cues and guidance, and provide support with encouragement
Level Four: Total Care by Parent • Ordered when discharge is imminent and the caregiver(s) are practicing all the skills they have learned
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• Nurses offer support and guidance but allow the caregiver(s) to practice the skills independently
HEADING HOME
My Care Team Worksheet Team Member
Name(s)
Contact Info
Cardiologist Family Physician Pediatrician Nurse Practitioner Clinic Nurse Social Worker Physical Therapist Occupational Therapist Speech and Language Pathologist Child Life Specialist Pharmacy Dietitian Psychologist Discharge Coordinator Home Care Case Manager Home Respiratory Therapist Other:
Preparing for Your Child’s Discharge and Follow-up 9
What to Expect
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Behavior Changes in behavior are a normal part of recovering after heart surgery. A child’s surgery is a difficult experience for everyone in the family, and behavioral changes are just one of the ways children communicate. Some children may: • Cry more
• Cling more
• Act out or show anger
• Be quiet and withdrawn
• Need more attention
• Sleep poorly (restless, nightmares, bed wetting)
• Have changes in appetite
These changes are not uncommon. Your presence, patience and understanding will help. Reassure your child that they are safe and well. Read books or make believe about hospitals and Doctors to highlight the positive aspects. Your child’s normal personality will come back again, usually within the first few weeks. Activity Seat belts and car seats should ALWAYS be used as instructed by the manufacturer. Do not adjust the straps or fasteners above or below the incision site. Most children increase their activity at their own pace. • Let your child set the pace • Don’t lift infants under their arms for six weeks • Avoid rough play for six weeks
• Insist on at least one nap or rest period a day for two to three weeks • Allow your child to return to school in one to two weeks
Teenagers may need reminders not to overexert themselves in the first few weeks. • Avoid contact sports for six weeks • Avoid wearing backpacks or carrying heavy books for six weeks • Avoid driving for six weeks
• Avoid front seats with air-bags for six weeks • Encourage teens to get enough rest and sleep
If any activity causes shortness of breath, extreme sweating, or chest pain, call your Cardiologist.
Preparing for Your Child’s Discharge and Follow-up 11
WHAT TO EXPECT
What to Expect at Home After Surgery
Diet It may take time for your child’s appetite to return to normal. Don’t force your child to eat, but do encourage fluids to keep your child well hydrated. Eventually, as they begin to tolerate more and their appetite returns, encourage them to eat a healthy diet to promote healing and recovery. All cardiac patients are followed by a Dietitian in our hospital. If you have questions or would like to learn more about providing a healthy diet for your child at home, feel free to reach out. If your child has special dietary needs, your Dietitian will provide teaching and resources to ensure you feel comfortable before returning home. If your child has growth concerns, is going home on high calorie feeds, or is going home on tube feeds, you will be referred to an outpatient Dietitian upon discharge. Medication Every cardiac patient on our unit is followed by an inpatient Pharmacist. This Pharmacist will work with you before discharge so that you understand things like: • What medication has been prescribed for your child
• How each medication works
• How it helps your child
• How long your child is expected to be on each medication
• How much to give and when
• What side effects to watch for
If there have been many changes to your child’s home medication plan since being admitted to hospital, your Pharmacist will develop and review a new medication schedule with you. Where do I fill my prescriptions? Your Discharge Coordinator will give you a copy of the Discharge Medication Reconciliation Form (MedRec) which is the prescription that you take to a pharmacy to be filled. You are encouraged to fill your first set of prescriptions at our Rexall Outpatient Pharmacy downstairs on Level One. They have all of the medications in stock and know how to prepare them. We encourage you to visit your regular local pharmacy within the first week of being home so that they have time to learn about your new medications and how to prepare them.
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If a child less than one year old vomits within 10 minutes after giving the medicine, you can give it again. If they vomit more than 10 minutes later, wait until the next dose. If a child is more than one year old and they vomit within the first 15 minutes, you can give it again. If they vomit after 15 minutes, wait until the next dose. What if my child misses a dose of medication? Scheduling the time of a medication after a missed dose depends on which medicine was missed and when the next dose is due. If you are close to the next dose, do not administer it twice. If you have questions about whether or not to skip the missed dose, please call your Pharmacist for guidance. Who do I call if I have questions after going home? If you have questions about your child’s medicine after going home, you can call our Rexall Outpatient Pharmacy at 780-407-4881 or your local home pharmacy where the prescriptions have been filled. If you want to speak with the Pharmacist who worked with you while you were in hospital, please call the outpatient clinic at 780-407-3957 and ask to have the inpatient Pharmacist paged. Returning to School Your child may return to school within one to two weeks after surgery. If your child requires extra supports at school you will need to contact the school principal as soon as possible. This allows the school time to assess your child’s needs, develop a plan to address those needs, and access funding and supports. Each child’s needs are unique and the supports they receive at school will be tailored to meet those unique needs. It may take time to get everything in place so that your child can safely return to school. If necessary, the principal will make referrals to appropriate school service providers, including the Regional Collaborative Service Delivery (RCSD) team to address your child’s needs. A care plan is developed together with the child, the family, and the community school to address the child’s medical/physical needs to maximize participation.
Preparing for Your Child’s Discharge and Follow-up 13
WHAT TO EXPECT
What if my child vomits after I give their medicine?
Post-Op Follow-Up Day 10 Echocardiogram If your child had open heart surgery, they will need to have an echocardiogram (ultrasound) of their heart done once before you go home, and again around 10 days after the surgery. This echocardiogram is done to look for how well the heart is pumping and if there is any fluid around the heart. If your child is still in hospital 10 days after surgery, both echocardiograms will be done before you leave. If you have been discharged before day 10 post-op, an appointment will be made for you to have this echocardiogram done in your local outpatient cardiology clinic. If you live far away from your local cardiology clinic and require close monitoring, you may be asked to stay in Edmonton until you have had this appointment. See Your Family Doctor or Pediatrician It is also recommended that you book an appointment for your child to see their Pediatrician or Family Doctor one or two weeks after the surgery. This enables your Doctor to become familiar with your child now that they have had heart surgery. Immunizations After Cardiac Surgery After surgery, your child should wait at least two weeks before receiving their next regularly scheduled immunizations. After two weeks, you may continue to follow the recommended immunization schedule as outlined by your province and Pediatrician/Family Doctor. The only exception is if your child had blood products during their surgery or hospital stay. If Your Child Received Blood Products If your child received blood products while in hospital, you will be given copies of the blood bank tags before you are discharged. Check with your Pediatrician or Family Doctor to see if your child needs an MMR vaccination (for protection against mumps, measles and rubella). Your child may be required to wait six or seven months for this vaccine if they received any blood products while in hospital. RSV Synagis Program SYNAGIS is a prescription medication for children to help prevent illness caused by respiratory syncytial virus (RSV). After surgery, children who are already registered in the Synagis program might receive an extra dose. Children under two years old with significant heart disease may be eligible to start the program. Please speak with your Cardiologist or the cardiology team on service if you are interested in learning more or to see if your child qualifies for the program. 14 Stollery Congenital Heart Program
Date and Time
Location
Day 10 Echocardiogram
Pediatrician/Family Doctor (one to two week follow-up)
First follow-up appointment with Pediatric Cardiology Other appointments:
Remember to bring all of your child’s discharge paperwork and medications to your child’s follow-up appointments. Tips for visits to the Cardiology Outpatient Clinic: • Bring your child’s provincial care card and Alberta Healthcare Number • Allow time for weather and parking
• Know that appointments can run anywhere between one and four hours in length and prepare accordingly • Try to limit bringing siblings if at all possible
Preparing for Your Child’s Discharge and Follow-up 15
WHAT TO EXPECT
My Child’s Appointments After Heart Surgery
Pain Management
16 Stollery Congenital Heart Program
Most children who have had an operation have at least some pain. How much pain your child will have, and for how long, will depend on your child and the type of operation they had. Some children will feel tired and sore for two to three weeks after surgery. Here are some things you should know about your child’s post operative pain: • Not all children feel pain in the same way
• Comforting your child will help them to relax and relieve pain
• In the days after discharge from hospital, pain should get better, not worse
• Distracting your child can also help to reduce pain
• Pain medicine will help your child hurt less
• Comfort and distraction can be equally as important as giving medicine to your child
Pain Assessment Knowing if your child is in pain Sometimes, your child can or will tell you when they hurt. They may use words like pain, hurt, owie, or booboo. They may point to the area that hurts, or try and protect it by guarding it. If your child doesn’t complain of pain, you can ask them how much pain they have. Sometimes using a visual scale can help. If your child is older, the Nurses in the hospital may use a 0 to 10 pain scale to find out how much pain your child is experiencing. You can also use this scale. Ask your child to rate their pain by putting a mark on the scale. Zero is no pain and 10 is the worst pain ever.
10 9 8 7 6 5 4 3 2 1 0
Most Intense Pain Very Severe Pain Severe Pain Moderate Pain Slight Pain No Pain
What to look for to see if your child is in pain Some children will not (or cannot) speak about their pain. Watch your child carefully and see what you think. Parents often know if their child has pain. Look to see if your child frowns or kicks his legs. Are they grinding their teeth? Does your child pull his legs up to his stomach? If your child moans or cries more than usual, or is stiff, they may have pain.
Preparing for Your Child’s Discharge and Follow-up 17
PAIN MANAGEMENT
Pain Management
Use the following pain scales to help you look for signs of pain: PAIN MEASUREMENT SCALE
NO HURT
0
HURTS LITTLE BIT
1
No pain
2
HURTS LITTLE MORE
3
4
Mild
HURTS EVEN MORE
5
6
HURTS WHOLE LOT
7
Moderate
8
HURTS WORST
9
Severe
10 Worst pain imaginable
The Faces Pain Scale - Revised: toward a common metric in pediatric pain measurement. Hicks CL1, von Baeyer CL, Spafford PA, van Korlaar I, Goodenough B.
FLACC PAIN SCALE
FLACC Scale
Score Zero
Score One
Score Two
1. Face
No particular expression or smile.
Occasional grimace or frown, withdrawn, disinterested.
Frequent to constant frown, clenched jaw, quivering chin.
2. Legs
Normal position or relaxed.
Uneasy, restless, tense.
Kicking, or legs drawn up.
3. Activity
Lying quietly, normal position, moves easily.
Squirming, shifting back and forth, tense.
Arched, rigid or jerking.
4. Cry
No crying (awake or asleep).
Moans or whimpers; occasional complaint.
Crying steadily, screams or sobs, frequent complaints.
5. Consolability
Content, relaxed.
Reassured by occasional touching, hugging or being talked to.
Difficult to console or comfort.
Merkel, S.I., Voepel-Lewis, T., Shayevitz, J.R., Malviya, S., 1997. The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatric Nursing 23 (3) 293–297. 18 Stollery Congenital Heart Program
Before you leave the hospital with your child, your medical team will tell you how you can help your child when he or she hurts. Giving pain medicine regularly in the first few days after your child is home will help them to hurt less. Don’t wait to give pain medicine Pain relief works best when you don’t wait until your child is in a lot of pain before you give the medicine. If you wait, it may take longer for the pain to go away. After the first few days, when your child hurts less, give the medicine only as needed. Acetaminophen (Tylenol or Tempra) Acetaminophen, Tylenol and Tempra are three different names for the same medicine. If your child is having mild pain, you can use regular acetaminophen every four hours. The amount of medicine to give depends on your child’s age and weight. Read the directions on the side of the bottle or box to find out the right amount, or dose, for your child. Acetaminophen is a safe medicine to give your child. There will be no major side effects when you give this medicine as explained on the box or bottle. Other pain medicines Your medical team may give you other pain medicines for your child to use at home. This medicine is sometimes used by itself, or sometimes together with acetaminophen. If the Doctor prescribes this other pain medicine for your child, ask how and when to use it properly. If this medicine does not help your child, ask your Nurse Practitioner (NP), Doctor, or Family Doctor for advice. Before you leave the hospital, fill in the information below or ask your Nurse Practitioner to help you. The pain medicine for my child is:
Name of the medicine
How much to give
How often to give it
Preparing for Your Child’s Discharge and Follow-up 19
PAIN MANAGEMENT
Relieving Your Child’s Pain at Home
Your Child’s Safety and Pain Medicine Using pain medicine as directed is a safe way to lessen your child’s pain after an operation. There is no danger that using pain medicine will cause your child to become addicted (they will not need more and more medicine to control the pain). Using pain medicine will not slow your child’s recovery. Once your child has begun to heal, and pain levels have decreased, your child will no longer require pain medicine. Most children need pain medicine only for a few days or up to a week after the operation. After the first few days, once your child is in less pain, you can just give your child acetaminophen for mild pain. Lessening Pain Without Medicine Distraction and comfort takes away pain Comfort your child in the ways that worked best for him before the operation. Hold, cuddle, or rock him. Give an older child a back rub, or encourage them to listen to music or practice breathing and blowing. Take your child’s attention away from their pain. Some children are redirected by: • Watching TV, videos, DVDs, or computer games
• Blowing bubbles
• Storytelling
• Playing with their favourite toy
• Playing with you
Ask to speak with one of our Child Life Specialists before going home. They can help you to plan and prepare ways to decrease pain without medicine at home. Finding out how your child is doing After you try to help your child feel less pain, you need to check and see if their pain is really less than it was before. Here is how you can check: • Check how much pain your child has one hour after you give the pain medicine • Use the pain scale or observe his actions
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• If you have trouble controlling your child’s pain, call your Doctor • Remember to comfort your child and try to take his or her attention away from the pain
Name of medicine: ______________________________________________________ Date and time given: ____________________________________________________ Use this table to keep track of your child’s pain and to make a note of what helped them. This table can also be helpful if you need to talk to a Doctor or Nurse about your child’s pain or the amount of medicine you have been giving your child. You can put this chart on your fridge.
Date and time
Amount of pain Is my child in pain? How much pain?
Type of medicine List the type of medicine given and how much was given.
Things you did that comforted List the things that worked.
Amount of pain one hour later Is my child still in pain? How much pain?
If pain medicine and comforting your child do not work to lessen pain, or if your child’s pain gets worse, call your Doctor’s office.
Preparing for Your Child’s Discharge and Follow-up 21
PAIN MANAGEMENT
The last pain medication given in hospital was:
Activity Precautions
22 Stollery Congenital Heart Program
A thoracotomy is an incision in the chest wall between the ribs. Thoracotomy precautions mean taking extra steps to maximize physical recovery while protecting the thoracotomy surgical site. It is important to maintain full mobility of the shoulder on the operated side, and to not restrict daily activity. Infants and Toddlers • Most children in this age group do not require major restrictions from usual activities.
This should be used when putting your child in and out of their car seats.
• Avoid picking your child up under the arms for the first six weeks after surgery. Instead, use the scoop-lift method by placing one hand under your child’s bottom while the other hand supports the trunk and head.
• For the first six weeks after a thoracotomy, avoid pulling on the affected arm (surgery side) when moving them into a sitting position or when dressing them. • Encourage tummy time.
Children and Teens The following activities and exercises should be performed for the first six weeks after a thoracotomy: • The most important exercise after surgery is walking. Walking helps to re-expand lungs and prevents chest infections. Aim to gradually increase walking distance and speed on a daily basis. • Keep proper posture. Make sure your shoulder (on the side of the operation) is mobile and flexible. Check your posture in the mirror. Make sure you are not leaning towards your operated side.
• In the first few days after surgery, start to exercise your shoulder within your comfort limits. Try to use your shoulder and arms as normally as possible within pain limits. Avoid lifting anything with your affected arm in the first days after surgery. Do pendulum and shoulder exercises daily. Speak with your Physical Therapist while still in hospital to learn more.
There are no driving restrictions required after a thoracotomy, however, insurance companies often do not cover drivers for the first six weeks after heart surgery. You should wear a seatbelt at all times while in a vehicle.
Preparing for Your Child’s Discharge and Follow-up 23
ACTIVITY PRECAUTIONS
Thoracotomy Precautions
Sternal Precautions A sternotomy is an incision along the breastbone, also called the sternum. Sternal precautions mean taking extra steps to protect the healing breastbone after a sternotomy. Using these techniques after heart surgery promotes active living by focusing on safe movement activities. Infants and Toddlers • Your child’s overall activity is restricted for the first six weeks after a sternotomy to allow the breastbone to heal. • Increase your child’s activity slowly, avoiding activities which may disturb the wound. • Avoid picking your child up under the arms for the first six weeks after surgery. Instead, use the scoop-lift method by placing one hand under your child’s bottom while the other hand supports the trunk and head. This should be used when putting your child in and out of their car seats.
• Avoid giving your child tummy time in the first few days after a sternotomy. If your child rolls onto their tummy by themselves without signs of pain, it is okay. • Two weeks after a sternotomy, lying on their tummy is encouraged for normal development. • To encourage your child’s overall development, do supportive sitting with your child, or hold them upright while supporting them against your chest.
Children and Teens To protect your breastbone after a sternotomy, you can use a method called Keep Your Move in the TubeTM. Pretend you have a large paper towel tube over your upper body (chest and head). Your arms are against your side while your elbows, forearms and hands are free. It’s like pretending to be a T-Rex Dinosaur ©2016 Baylor Health Care System. Used with permission. with short arms. In this position you could lift a milk container, open a door, wash your hair, clean yourself after going to the washroom, or scratch your back. When getting up from a chair, you can push yourself up using your arms while they are “in the tube”. ©2016 Baylor Health Care System
24 Stollery Congenital Heart Program
Š2016 Baylor Health Care System. Used with permission.
Driving After Sternotomy If you drive, you should arrange for alternative transportation for the first six weeks after a sternotomy. If the airbag suddenly deployed, it could cause harm to your healing breastbone. You may also find your reaction time slower for the first little while after surgery. Car insurance companies often do not cover drivers for the first six weeks after heart surgery. Instead, arrange for a friend or relative to drive you. Sit in the back seat of a car to avoid airbags for the first six weeks. You should wear a seat belt at all times while in a vehicle. Preparing for Your Child’s Discharge and Follow-up 25
ACTIVITY PRECAUTIONS
Keep Your Move in the TubeTM
Discharge Teaching
26 Stollery Congenital Heart Program
When Sutures Come Out If your child still has sutures present when they are discharged from hospital, you will be given instructions on when they should come out and who will remove them for you. This can usually be done at your postoperative followup appointment so that you do not need to make an extra trip to the Doctor. Below are some general guidelines about when sutures can come out, but the timing is sometimes adjusted by your Doctor or Surgeon based on what they feel is best for you.
Sternal incision sutures
Usually removed three weeks from the date of sternal closure
Mediastinal chest tube sutures
Removed seven to 10 days post chest tube removal
Other chest tube sutures
Removed seven to 10 days post chest tube removal
Thoracotomy incision and any continuous sutures
Removed three weeks from the date of surgery
Peritoneal dialysis catheter removal site sutures
Removed two weeks post line removal
ECMO insertion site sutures
Removed two weeks from discontinuation of ECMO
If you have any questions or concerns about any of your child’s suture sites before they are due to have them removed, please feel free to contact your Doctor or Nurse.
Preparing for Your Child’s Discharge and Follow-up 27
DISCHARGE TEACHING
Incision and Wound Care
My Child’s Suture Sites
Date of incision or line/tube removal
Date of planned suture removal
Who will remove them and where?
Taking Care of Your Child’s Wounds After Surgery After surgery, your child will have a wound (incision) in the middle of their chest or on the side of their chest. They may also have other small wounds where tubes and wires have been. It is important to check your child’s wounds daily for signs and symptoms of infection until they are fully healed (scabs have formed and fallen off). Signs and Symptoms of Infection • Increased pain or irritability
• Hot to touch
• Increased wound drainage, or a change from clear to coloured or odorous (smelly) drainage
• A sudden fever (temperature greater than 38.5 °C)
• Redness or swelling
• A blistered or hard spot in the middle of the wound
If you see one or more of the above symptoms, or if you are worried for any reason, please call the Cardiology Clinic for help at 780-407-3957. For concerns after hours, you may call the hospital’s general switchboard at 780-407-8822. In event of any medical emergency, call 911 or proceed to your nearest emergency room. Bathing and Personal Care Your child may have a shower once all the wires and tubes are out. Your child may have a shallow bath 10 days after the operation, or when the wound is closed with no gaps and no drainage. Do not submerge or soak your child’s wounds in water until the scabs have fallen off and the area looks healed. When cleaning wounds, use a soft cloth and clean water. You may use a gentle, dye-free, fragrance-free soap if you wish, but soap is not usually necessary and 28 Stollery Congenital Heart Program
Tips for Wound Care at Home • Your child’s wounds do not need to be covered with dressings unless they are oozing. • Sternal wound dressings are usually removed two days after the breathing tube comes out. If your child does go home with a dressing, you will be given instructions about how to take care of it at home. • It may take some time for scabs to fall off. Do not pick at the scabs to
make them fall off sooner as this may cause irritation or infection. • If your child scratches or picks at the wound, try covering it with a light bandage or clothing. • Do not use cosmetic lotions, creams or powders on the wound until it is fully healed with no open areas, no scabs and no drainage. • Do not use skin prep solutions or additional products unless directed to by your care provider.
Scar Care Your child’s wound should heal fairly quickly and will partially fade as time passes. Sometimes a scar can become raised and enlarged. If you are worried about how your child’s scar looks, please contact your child’s Pediatrician or Pediatric Cardiologist. Sun Protection Do not put sunscreen on your child’s wounds until all the scabs have formed and fallen off and the area looks healed. Instead, cover the wounds with clothing that does not let the light through. Once the wounds have healed, it is especially important to put sunscreen on new scar(s) to prevent them from becoming dark in colour. Advanced Dressings If your child is expected to be discharged home with an advanced dressing such as Mepilex, you will be given specific instructions by your Discharge Coordinator or wound care specialist before you leave. Special Dressing Change Instructions:
Preparing for Your Child’s Discharge and Follow-up 29
DISCHARGE TEACHING
dyes or fragrances might irritate the wound. If the wound gets wet, gently pat dry. Ensure the wound dries thoroughly by leaving it open to air for 10 or 15 minutes before redressing the wound or before clothing your child.
When Discharge Teaching is Complex In some cases, patients and families will receive extra discharge teaching specific to their situation. This type of teaching may include things like: • How to take care of your child after an electrophysiology study or ablation • What to expect after cardioversion • What to do following valve surgery • Post procedure care after a child receives an Amplatzer device closure
• Going home with a trach/vent or VAD • Going home with an IV or on home milrinone • Going home with a Jackson-Pratt wound drain
In these types of cases, you will meet with your specialty team. Rest assured that your child will not be discharged home until you understand and have what you need to properly care for your child at home. Children’s Home Care Services Sometimes, a child might meet all requirements for discharge with the exception of one or two ongoing medical needs that can be managed with support at home. Examples include complicated wound management, or healthcare needs requiring comprehensive case management and supports in the patient’s home environment. If your child is eligible to receive support at home, a referral to the Home Care Team will be made by your medical team while you are still in hospital. A Home Care Case Manager will meet with you to complete an assessment and to build a plan based on your child’s needs and your patient/family goals. Home care works closely with families to promote independence and to coordinate care and services including community supports. Home care will assess a patient and family’s ability to manage care at home on an ongoing basis. Services are adjusted as care needs change. Patients who have only a single service need, or do not require care in the home environment, might be eligible to be seen in the Children’s Home Care Ambulatory Clinic. Home care is not required in the majority of cases. Home care does not cover personal care services, medical-surgical supplies, or “just in case” scenarios. If you have questions about receiving care at home, please feel free to speak with a member of your medical team. If you have already been approved for home care and have questions about your discharge planning, you may ask to speak with your Home Care Case Manager.
30 Stollery Congenital Heart Program
Cardiac refers to the heart. Arrest means stop. Sudden cardiac arrest is the sudden and unexpected loss of heart function (when a person’s heart stops beating). CPR works to move blood to the brain to help prevent brain damage. Knowing how to respond to a cardiac arrest can increase the odds of survival and recovery. CPR Teaching for Families at the Stollery Here at the Stollery, our Clinical Educators facilitate a weekly CPR class. This class is based on the principles of CPR as recommended by the Heart and Stroke Foundation of Canada. This class is open to anyone who is interested, and is strongly encouraged for families of children with cyanotic heart disease. These classes are taught weekly and you can call the Family Room (780-407-7255) to register or to learn more about the program. By participating in this class, you will work in a small group setting to learn the basic skills of CPR, how to use an Automated External Defibrillator (AED), and how to relieve choking. You will receive an all-in-one learning kit called “The Heart and Stroke Foundation of Canada’s Family & Friends® CPR Anytime® Kit”. This kit uses the research-proven “practice while watching” technique, which allows users to watch and learn lifesaving skills while practicing on a personal mannequin. These fully bilingual (English/French) kits help extend lifesaving knowledge to more people. Even if you choose not to participate in CPR teaching at the Stollery, The Family & Friends® CPR Anytime kit is available for purchase through Laerdal Medical Canada Ltd. Orders can be made online through www.laerdal.ca or by phone at 888-LAERDAL (523-7325). Please note: Participation in CPR teaching at the Stollery does not result in certification. For more information on CPR certification courses, please contact your local first aid and CPR course provider. My CPR Class is booked! Provider: Location: Date:
Preparing for Your Child’s Discharge and Follow-up 31
DISCHARGE TEACHING
Cardiopulmonary Resuscitation (CPR)
Infective Endocarditis What is Infective Endocarditis? Endocarditis, also called infective endocarditis or bacterial endocarditis, is an infection in the tissues of the heart. It occurs when germs (usually bacteria) enter the blood stream and attach to areas in the heart. Endocarditis can occur quickly (acute infective endocarditis) or slowly (subacute or chronic endocarditis). It is normal to have bacteria in the mouth, on the skin, and in the stomach, intestines, lungs and urinary tract. Most bacteria that get into the bloodstream are killed by the immune system. In some cases, the immune system cannot handle the bacteria and endocarditis can occur. Most children with a heart problem are at higher risk of getting endocarditis than the general population. It is important that you be aware of what to watch for. Signs and Symptoms • Fever
• Unexplained weight loss
• Sweats or chills, particularly night sweats
• Nausea, vomiting or diarrhea
• Feeling generally unwell (tired, weak, aches and pain, “flu-like”)
• Pain in muscles and joints
• Loss of appetite
• Headache • Persistent tired feeling • Rash
In acute cases, people become very unwell, very quickly. In subacute cases, the symptoms may be subtle and seem to linger, making your child feel as if they are unable to shake the feeling of being unwell. If any of the symptoms above persist for more than five days, call your healthcare provider. If your child has been feeling unwell, it is very important that they have blood work done to determine if they have bacteria in their blood. The blood work will help your Doctor determine what treatment is best for your child. Preventing Endocarditis • Good oral hygiene – brush teeth twice a day and don’t forget to floss • See the Dentist regularly (once a year minimum) for teeth cleaning and a check up
32 Stollery Congenital Heart Program
• Take antibiotics prior to dental work if recommended by your Cardiologist
Heart failure is a term used when blood is not being pumped to the body efficiently. When this happens, an infant or child can show unfavourable symptoms that are termed “heart failure”. Heart failure can occur in infants and children for many reasons. For example, if an infant has a congenital heart defect that is not repaired and too much blood is flowing to the lungs, or if a child has a weakened heart muscle that cannot pump much blood out to the rest of the body. Whatever the reason may be, increased signs and symptoms of heart failure need to be communicated to your cardiology team. It may be that your child has a simple cold, but it is important to have a healthcare practitioner review your child to ensure your child is still managing at home. Signs and Symptoms • Shortness of breath or fast breathing - especially with feeding, exercising, or during times of rest • Poor feeding and poor weight gain • Tiredness or reduced energy especially with physical activities that your child could normally participate in before
• Puffiness (edema) - especially around the eyes and belly • Smaller than normal amounts of urine • Irritability due to the child feeling unwell or uncomfortable • Tummy upset/tummy pain/vomiting
Some of these signs and symptoms can happen alone or in combination together. Treating Heart Failure Most heart failure symptoms can be treated in the outpatient clinic. However, some infants and children will require hospitalization when experiencing increased or new symptoms of heart failure. There are many aspects to treating a child who has heart failure: • Often, a special feeding plan and medications will help to control heart failure symptoms. • Sometimes, medication is used to help reduce the fluids in the child’s body. This will help to bring down the puffiness. These medicines are called “diuretics”. • Other medications can be used to lower the blood pressure and ease the work on the weakened heart
muscle. This helps blood to flow in the correct direction. These medications are called “ACE inhibitors”. • Medications that are used to slow the heart rate are called “beta-blockers”. • Your child’s Cardiologist or Nurse Practitioner will sometimes need to adjust these medications in clinic.
Preparing for Your Child’s Discharge and Follow-up 33
DISCHARGE TEACHING
Signs and Symptoms of Heart Failure
Children with heart failure do not usually require activity restriction as part of their treatment plan. However, they will naturally restrict their activity themselves during times when they feel more tired or unwell. In special circumstances of heart failure, activity restrictions are prescribed by a Cardiologist. If your child requires activity restriction, they will be outlined clearly in your child’s discharge plan before you go home. If you have any questions or concerns about heart failure in your child after leaving hospital, please call the cardiology clinic at 780-407-3957.
When to Call for Help Emergent Concerns If you have an emergent concern about your child, call 911 to access emergency services immediately. Some examples of urgent concerns are: • Trouble breathing
• Fainting
• Seizures
• Not waking up
Urgent Concerns that are Related to Your Child’s Heart Problem If you have any questions or concerns within the first six weeks after your child leaves hospital, and you think they are related to your child’s heart problem: • Contact your cardiac clinic Nurse during regular business hours • If you need to speak with a Physician outside of business hours, use the list below to find the hospital closest to you and ask to speak with the Pediatric Cardiologist on call. • Edmonton (780) 407-8822
• Winnipeg
(204) 787-2071
• Calgary
• Saskatoon
(306) 655-1000
(403) 955-7211
Some examples of these concerns include: • Changes in feeding such as decreased fluid intake; loss of appetite; weight loss; tiredness and sleeping during feeds; not waking for feeds; shortness of breath while feeding; vomiting or diarrhea; increased sweating during feeding • Changes in breathing such as breathing very quickly, especially when asleep; noisy breathing
34 Stollery Congenital Heart Program
or making a grunting sound; increased sweating; ongoing cough • Changes in behaviour such as extreme sleepiness or irritability • Changes in colour such as paleness; mottling of the skin (skin looks marbled); blueness of the lips and tongue or nail beds (cyanosis); rash on hands, feet, or body
• Signs of water retention such as swelling or puffiness of the eyelids, face, hands, or feet; swollen genitals in boys; swollen legs or ankles in older children; less urine or fewer wet diapers
Ordinary Health Concerns If you have any questions or concerns about your child’s health that you think are NOT related to your child’s heart problem, please contact your child’s Pediatrician or Family Doctor. Some examples include: • Cold symptoms, such as runny nose and cough • Rashes
• Questions about immunizations • Injuries from ordinary activities
Preparing for Your Child’s Discharge and Follow-up 35
DISCHARGE TEACHING
• Signs of wound infection such as fever, redness, puffiness, increasing tenderness, or drainage from the wound
Looking Ahead
36 Stollery Congenital Heart Program
How does a congenital heart condition affect overall development? Oftentimes, the majority of children with CHD have completely normal learning and development. Some children with CHD have higher rates of deficits in cognition, language, attention, or motor functions. It is difficult to predict when a cardiac diagnosis will impact the learning and development of a child. It varies significantly from patient to patient, and is influenced by each child’s specific diagnosis and any other diagnoses they may have, as well as how well they recover following medical intervention. Research has shown that the greatest predictor of psychological and emotional functioning after surgery is the child’s functioning before surgery. The Complex Pediatric Therapies Follow-Up Program Children aged five years old and younger, who have received complex surgeries or heart-lung life support in Western Canada, are eligible to be followed by the Complex Pediatric Therapies Follow-Up Program (CPTFP). Services are offered to help young children reach early developmental milestones and to help pre-school children with school placement and learning. Assessments are offered in developmental and neonatal follow-up clinics. They are done six months after treatment or surgery, between 18 to 24 months of age, and at four to five years of age. Assessments are done by qualified professionals within multidisciplinary clinics. The CPTFP will check motor, language and learning skills. They will take growth measurements and a health history. Both physical and neurological examinations will be done. The CPTFP encourages early intervention and early education programs to ensure the skills needed for ongoing learning and community/school integration are being developed. As your child’s health improves, and they grow and develop in all areas, the CPTFP provides assessments that confirm their skills or assist them if required. The CPTFP works in collaboration with many specialized medical disciplines to try and find better predictors of outcomes. They do this by registering every child across Western Canada who is serviced by their follow-up program. This registry will help to achieve the best health and development outcomes possible for children in the future. If your child is eligible to be seen by the CPTFP, they will reach out to you directly. Speak with a member of your care team to learn more.
Preparing for Your Child’s Discharge and Follow-up 37
LOOKING AHEAD
Learning and Development
Ongoing Care Will your child need to see a Cardiologist for the rest of his life? With a congenital heart defect, it is very likely that your child will need to have regular follow-up for the rest of their life. How involved the care needs to be depends on the type of condition they have, and how successful treatment was. It is important to have your child monitored across time, even if treatment was very successful and your child is feeling healthy, because the heart can change over time. Children under the age of 18 will need to see a Pediatric Cardiologist regularly. At 18 years old, they will need specialized adult care. Your child’s Cardiologist and clinic transition Nurse will be able to tell you what to expect in terms of visits and how to transition to adult congenital cardiology when the time comes. Should your child still see a Family Doctor? Yes, your child should continue to see your Family Doctor or Pediatrician for typical ailments, and to attend regular checkups to ensure overall health. It’s important to follow a proper care routine and to see the Doctor regularly. Be sure they know the details of your child’s heart condition.
For Teens Sex, Drugs, and Rock and Roll Sexuality is a normal part of adolescent development. It is generally recommended that sexual activity be delayed for six to eight weeks after open heart surgery. Sexual activity could compromise sternal wound healing by placing considerable strain on the chest, and because extreme changes in breathing patterns could generate high pressures inside the chest. Reintroduce sexual activity in a gradual fashion as comfortable. Always practice safe sex. Smoking tobacco or taking street drugs can damage your heart. In fact, these behaviors are even riskier for people with congenital heart disease. Avoid these unsafe practices at all times. If you have questions about sexual health and alcohol or drug consumption, speak with your Cardiologist to learn more about how these may impact you with your congenital heart diagnosis.
38 Stollery Congenital Heart Program
Major illness, trauma, infection or operations can affect an otherwise normal menstrual cycle. You may get your period within days of surgery. It may take a month or two to fully revert back to your normal cycle. Chest Care Young ladies might find a sports bra without an underwire useful for pain management in the early post-operative period. Breast tissue pulling on the sternum can be uncomfortable for a few weeks after surgery, especially when up and about. A firm binder or support bra will be helpful. Emotional Health It is normal to feel overwhelmed, frustrated or as if you aren’t getting better fast enough. Many people who have heart surgery need help to cope. Talk to your family or to your Doctor about how you are feeling and about which resources or treatment options are best for you.
Adult Congenital Cardiology and Lifelong Follow-Up Most people who have childhood heart surgery grow up to be healthy adults. Because of the risk of developing late complications related to structural heart disease, it is important they get the ongoing heart care they need to keep well. Adults who were diagnosed as children are generally seen every 12 to 24 months by a Cardiologist who specializes in adult congenital heart disease (ACHD). ACHD specialists will ensure that any repair made in childhood is still working well. Here are some tips to help adolescents transitioning into adult care to take charge of their health: Get Regular Heart Checkups Repaired hearts sometimes develop new problems over time. These include leaks, valve problems, heart muscle problems, and problems with heart rhythm. Your heart should be checked regularly to make sure nothing has changed. Get checked even when you feel well. Heart problems can start without any symptoms. Early detection and treatment can help to protect your heart. Some people find it helpful to keep track of their appointments and medications in their cell phone.
Preparing for Your Child’s Discharge and Follow-up 39
LOOKING AHEAD
Menstruation
See the Right Kind of Doctor If you were born with Congenital Heart Disease (CHD), experts recommend you get care at a special ACHD program. Congenital heart disease is very different from “regular” (or acquired) adult heart problems. Your heart team should have special training in taking care of adults born with complex heart defects. This will ensure that you get the testing and treatments that are right for you. Find the Right ACHD Care Team for You Having congenital heart disease does not need to hold you back! Wherever you go, you should find the ACHD team near you. You can find a listing of Canadian ACHD programs at www.cchaforlife.org/proximity. If at some point you do not live near an ACHD program, you should travel to one for a consult. Tell All Your Providers About Your Heart Treatment for other parts of your body can affect your heart. Certain medications and treatments may be risky. Whenever a new treatment is recommended, ask about any special risks for you due to your special heart. Report New Symptoms Tell your ACHD care team if you have fainting and/or dizziness, a racing or skipping heartbeat, shortness of breath, swelling in your ankles or abdomen, or excessive tiredness. They can determine whether or not these symptoms are related to your heart conditions. Protect Yourself from Heart Infection Heart infection (endocarditis) is when bacteria grow in the heart. It is serious and needs prompt treatment. Tell your ACHD care team if you have unexplained fever for five days or more. Ask your ACHD care team for instructions on if/when to use antibiotic protection prior to dental procedures. Be Kind to Your Heart Healthy heart habits will help to protect your heart. Maintain a healthy weight. Eat a healthy diet. Discuss with your care team an exercise routine that is right for you. Don’t smoke, abuse drugs, or drink to excess. Talk to your care providers about your specific risks for acquired heart disease. Keep Your Medical Records All your healthcare providers should know as much as possible about your heart’s unique structure and history. Health records can get lost over time. Your health records belong to you. Ask for copies of key information like test reports and surgical records.
40 Stollery Congenital Heart Program
Heart defects and surgeries can be hard to understand. But the more you learn, the more you can take charge of your heart health. Learn your complete diagnosis and how to draw your defect on a heart diagram. Ask questions of your care team until you understand your conditions and special health concerns. Adapted from “Adults Born with Heart Defects: Tips for Lifelong Heart Health” Canadian Congenital Heart Alliance www.cchaforlife.org
Preparing for Your Child’s Discharge and Follow-up 41
LOOKING AHEAD
Learn About Your Heart
Coping, Support and Getting Involved
42 Stollery Congenital Heart Program
Even the most routine hospitalization can be a difficult experience for a child and the whole family. One of the best things you can offer your child right now is a healthy you. Self-care is any action you take on purpose to care for your physical, mental and emotional health. Good self-care can be a challenge for many people. It can also be an important part of the healing process. Self-care is unique for everyone. Below are some ideas to get you started in developing your own self-care plan. It can be overwhelming to consider taking on many new things. It may be helpful to start with a couple of ideas and build on that. Physical Self-Care Eat regularly and healthfully
Get a massage
Exercise or go to the gym
Do physical activity that is fun for you
Practice martial arts or yoga Get regular medical care for prevention
Get enough sleep
Get medical care when needed
Take day trips or mini-vacations
Take time off of work
Other: __________________________
Wear clothes you like
Psychological Self-Care Make time for self-reflection Go to see a therapist or counselor Write in a journal Read non medical literature Take a step to decrease stress in your life Notice your inner experience – your dreams, thoughts, imagery, and feelings
Engage your intelligence in a new area – go to an art museum, performance, sports event, exhibit, or other cultural event Practice receiving from others Be curious Say no to extra responsibilities Spend time outdoors Other: __________________________
Let others know different aspects of you
Preparing for Your Child’s Discharge and Follow-up 43
COPING, SUPPORT AND GETTING INVOLVED
Caring for the Caregiver
Emotional Self-Care Spend time with others whose company you enjoy Stay in contact with important people in your life
Identify comforting activities, objects, people, relationships, and places, and seek them out Allow yourself to cry
Treat yourself kindly (for example, by using supportive inner dialogue or self talk)
Find things that make you laugh
Feel proud of yourself
Other: __________________________
Reread favorite books and watch favorite movies again
Express your outrage in a constructive way
Spiritual Self-Care Make time for prayer, meditation, and reflection
Sing
Spend time in nature
Celebrate milestones with rituals that are meaningful to you
Participate in a spiritual gathering, community, or group Be open to inspiration Cherish your optimism and hope
Express gratitude
Nurture others Contribute to or participate in the causes you believe in
Be aware of intangible (nonmaterial) aspects of life
Read inspirational literature
Be open to mystery and not-knowing
Other: __________________________
Identify what is meaningful to you and notice its place in your life
Listen to inspiring music
Support Services Through Social Work As part of the healthcare team, Social Workers provide assistance with building a plan to address family needs and coping. Supports can include: • Accessing funding supports and financial counseling • Coordination of time off work • Facilitation of extended stays in Edmonton
44 Stollery Congenital Heart Program
• Referrals to community programs and child/family counseling services
Getting Involved Cardiac Family Advisory Care Team (cFACT) The Stollery Congenital Heart Program has a Family Advisory Care Team designated to improving care specifically for cardiac families. Our cFACT focuses on bringing the perspectives of family and staff together to make collaborative decisions. They have supported and facilitated projects such as: • The bedside communication journal
• Expanded sibling supports
• Improvements to parking services
• Mentorship programs and quality of caring initiatives
If you are interested in joining cFACT, you can ask to speak to a member of your care team for more information. The Stollery Youth Advisory Council (YAC) The Stollery Patient & Family Centered Care Network invites youth to join the Stollery Youth Advisory Council (YAC). YAC brings a youth perspective to current and future child healthcare programs and services at the Stollery Children’s Hospital. YAC members have the opportunity to provide their ideas and input into policies, procedures, re-designs, and a variety of other initiatives that affect the healthcare of other youth both locally and provincially. Stollery YAC members: • Are between the ages of 12-18 • Are patients and/or siblings of a patient at the Stollery Children’s Hospital • Are diverse in healthcare and life experiences • Participate in YAC meetings, small group consultations, working groups and healthcare conferences
• Are registered volunteers with Alberta Health Services (AHS) • Are supported by the Stollery Patient & Family Centred Care Council, Stollery Children’s Hospital Management and AHS Stollery
Preparing for Your Child’s Discharge and Follow-up 45
COPING, SUPPORT AND GETTING INVOLVED
If you need help right away, or you are unsure of which community/ counseling program would best meet your family’s needs, you can speak with your local program’s inpatient or outpatient Social Worker to best assess your situation. See the resource section for more information on how to access social work support local to you.
YAC members have the opportunity to: • Meet other youth who have had similar experiences
• Express what makes them and their family unique
• Bring a youth perspective to decisions being made for and about patients and siblings
• Build leadership and communication skills
• Learn how to share their story and valuable insights
• Inspire others and be a part of something new
For youth and families interested in learning more about the Stollery YAC, please contact The Stollery Patient & Family Centered Care Group at StolleryFCC@ahs.ca 780-407-7255. Little Heart Heroes Fund The Little Heart Heroes Fund was created to support patient and family centred care initiatives exclusively for pediatric cardiac patients, and to provide support beyond medical needs. The fund was created in association with the Stollery Children’s Hospital Foundation and is a registered Canadian charity. Their hallmark event, HEART HEROES CAMP, is a medically supervised camp specifically created for children born with heart disease. Camp was created to promote independence among campers, provide them a safe setting to socialize with their peers, and allow them to discover they aren’t alone – other kids have faced similar obstacles. This is accomplished through a variety of team-based events over a weekend – from arts and crafts to rock climbing and boating. To learn more, visit their website: www.LittleHeartHeroes.ca SCORE: Stollery Cardiac Outcomes Research and Evaluation Medical research is a safe and organized way to learn about health, and to find better ways to treat children’s illness and disease. Medical research is often called a study or a clinical trial. The goal of the research is to answer a question that will improve care. Participating in medical research is not for everyone. You have the right to decline with no impact to your future medical care. If you would like to learn more about current opportunities to participate in cardiac research at the Stollery, ask to speak with a member from SCORE or email score@ualberta.ca.
46 Stollery Congenital Heart Program
COPING, SUPPORT AND GETTING INVOLVED Preparing for Your Child’s Discharge and Follow-up 47
Resources
48 Stollery Congenital Heart Program
RESOURCES
Resources Education Materials • Western Canadian Children’s Heart Network: www. westernchildrensheartnetwork.ca • Cove Point Foundation John Hopkins University: http://pted.org • Children’s Heart Clinic of Minneapolis: www. childrensheartclinic.org/Diagnosis. html • Children’s Hospital of Philadelphia: www.chop.edu/ centers-programs/cardiac-center • Cincinnati Children’s Hospital: Includes flash diagrams of
congenital heart defects https://www.cincinnatichildrens. org/patients/child/ health?FinderItem=84c957b4-136445de-b196-1bcc32e977ca • Heart and Stroke Foundation of Canada: http://www. heartandstroke.ca/heart • American Heart: http://www. heart.org/HEARTORG/ • Children’s Cardiomyopathy Foundation: http://www. childrenscardiomyopathy.org Phone: 780-342-7700
Arrhythmia and Electrophysiology • Canadian SADS (Sudden Arrhythmia Death Syndromes) Foundation: www.sads.ca Includes a private Facebook discussion group • The US HCM (hypertrophic cardiomyopathy) group
http://www.4hcm.org/ includes an active patient blog • The Heart Rhythm Society: www.hrspatients.org reviews the conduction system and basic arrhythmias
Support Groups National • www.cchaforlife.org Canadian Congenital Heart Alliance is an adult peer support group, based out of Toronto, run by patient/ family volunteers
• Family Support and Support Resources: http://www. westernchildrensheartnetwork.ca/ family-support-resources/
• Children’s Heart Network (CHN): www.childrensheartnetwork.org
Preparing for Your Child’s Discharge and Follow-up 49
British Columbia • CHILDREN’S HEART NETWORK Vancouver, BC Phone: 604-568-3005 (local) or 1-877-833-1773 (toll free outside Vancouver area) E-mail: chn@childrensheartnetwork.org Website: www.childrensheartnetwork.org Alberta • STOLLERY PEER SUPPORT UPOPOLIS http://www.kidshealthlinks.org/ upopolis (for children eight to 18 years)
• HEART BEATS Calgary, AB E-mail: info@heartbeats.ca Website: www.heartbeats.ca
• THE CHILDREN’S HEART SOCIETY Edmonton, AB Phone: 780-454-7665 E-mail: childrensheart@shaw.ca Website: www.childrensheart.ca Saskatchewan • LITTLE HEARTS FAMILY GROUP Saskatoon, SK E-mail: info@sasklittlehearts.com Website: www.sasklittlehearts.com Manitoba • CIRCLE OF HEARTS Winnipeg, MB Phone: 204-787-2532 E-mail: circleofhearts@hotmail.com Website: www.circleofhearts.ca Coping • UAH Psychiatric Treatment Clinic 780-407-6501
• 108 Street Mental Health Clinic Address: 9942 108 St NW
For Teens • https://www.anxietybc.com/ resources/mindshift-app Mobile App developed in Vancouver to help with managing youth anxiety. • The Stollery Psychiatric Consultation Liaison Program: An outpatient group for teenagers 13-17 living with 50 Stollery Congenital Heart Program
chronic illness. The goal is to teach and reinforce healthy coping and adjustment strategies to teens living with a chronic illness. Please ask your Physician for a referral. Phone: 780-407-7288 Email: ann.eddy@ahs.ca
RESOURCES
Transition to Adult Care • A Young Person’s Guide to Health Care Transition: Resources for teens to help them become better users of the adult healthcare system. http://hscj.ufl.edu/jaxhats/docs/ envisioning_my_future_gray.pdf • ON TRAC BC: www.ontracbc.ca/
• Pacific Adult Congenital Heart (PACH) Clinic: www.heartcentre.ca/ • Alberta Children’s Hospital Transition Program: http://fcrc.albertahealthservices. ca/transition/
• I Heart Change: www.iheartchange.org/ Adult Congenital Heart Resources • www.cachnet.org is the website for the Canadian Adult Congenital Heart Network. There is a tab called “Our Centres” and under that tab is “Find A Centre”. Each centre in Canada is listed and the contact information for each clinic is available. This allows patients/ families to find a centre for ACHD care in each province so that their lifelong care can be arranged no matter where they move in Canada. • www.achaheart.org is the website for the Adult Congenital Heart Association in the USA. This site has a tab for “Your Heart” and under that tab is excellent patient information. It also includes a “Clinic Directory” tab which
includes information and contact information for ACHD clinics in the USA and Canada. It is based on clinic self reporting, so only clinics that respond are included. However, this is still a useful resource for patients when traveling or moving to the US. • www.achdlearningcenter.org is a good website with 15 minute learning modules regarding various lesions and aspects of care unique to adulthood such as birth control and reproductive issues. • www.cchaforlife.org Has good general congenital heart disease information. Also has a link to life, medical and travel insurance information.
Preparing for Your Child’s Discharge and Follow-up 51
2
4A7/4A8
CSB
Clinical Science Building
University of Alberta Hospital •
LEVEL
Walter C. Mackenzie Health Sciences Centre
Elevators/Stairs/ Escalator
➤
A
B
C
D
E
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G
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MAP REF.
➤
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WALTER C. MACKENZIE HEALTH SCIENCES CENTRE Stollery Children’s Hospital • Mazankowski Alberta Heart Institute
1
Medical Sciences Building
2
LRT
1K Zeidler Ledcor Centre
Public Route 1E
Information
1 114 St Entrance 2 Stollery Entrance 4 Admitting
1 5
STOLLERY GIFT SHOP
6 Emergency Entrance 7 112 St Entrance
SOUTH GLASS ELEVATORS
$ ATM
6
7
8
$
7
PREADMISSION CLINIC
1D 1G
1J
1H
1C4 57-3/8” 57-3/8 8”
2
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4
1A1
1A5
$
1H 1A2
1C3
1C2
3
9
1C1
1A7
OutPatient Residence
11
52 Stollery Congenital Heart Program
6
1A6 EMERGENCY
1A3
1A8
1B
5
1U
10
MCMULLEN ART GALLERY
N
5 Mazankowski Entrance
8 Bernard Snell Hall
$
4
3 MRI
1F
➤
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3
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Clinical Sciences Building
PEDWAY ON LEVEL 2
MAZANKOWSKI ALBERTA HEART INSTITUTE
EAST PUBLIC PARKADE
2
4A7/4A8
RESOURCES
CSB
Clinical Science Building
University of Alberta Hospital •
LEVEL
WALTER C. MACKENZIE HEALTH SCIENCES CENTRE Stollery Children’s Hospital • Mazankowski Alberta Heart Institute
4
Walter C. Mackenzie Health Sciences Centre
THE TEEN ROOM
Elevators/Stairs Public Route
4E
4F
Atrium Area Washrooms
• THE FAMILY ROOM • STOLLERY SCHOOL • AWASISAK INDIGENOUS HEALTH
1 Level 4 Atrium, Labyrinth & 4D
Patient Library
4G
➤
2 Guru Nanak Dev Healing Garden
4H
SOUTH GLASS ELEVATORS
THE HEALING GARDENS
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1
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STOLLERY 4C CARDIAC INPATIENT UNIT
THE BEACH
4B
N
4A5 / 4A6 4A4
4A9
2
CSB
Clinical Science Building
4A7/4A8
MAZANKOWSKI ALBERTA HEART INSTITUTE
WALTER C. MACKENZIE HEALTH SCIENCES CENTRE
PleaseUniversity Note: of Alberta Hospital • Stollery Children’s Hospital • Mazankowski Alberta Heart Institute The Pedway to the East Public Parkade is located on Level Two of the Mazankowski Alberta Heart Institute. Pedway closes at 9:00 pm after which access to the hospital is through Security Services located at the Emergency Department entrance. The Stollery Pediatric Cardiac Intensive Care Unit (PCICU) is on Level Six of the Mazankowski Alberta Heart Institute.
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Contact Information Cardiology Clinics:
Nurses:
Edmonton
(780) 407-3952
(780) 407-3957
Calgary
(403) 955-7858
(403) 955-7316
Winnipeg
(204) 787-2410
(204) 787-3325
Saskatoon
(306) 966-8114
(306) 655-1451
Stollery Outpatient Cardiology Contact Numbers: Outpatient Social Worker
(780) 407-7719
Aboriginal Social Worker
(780) 407-2930
Outpatient Dietitian
(780) 407-6612
If you need to urgently speak with a Physician after hours, phone your local hospital switchboard and ask to speak with the Pediatric Cardiologist on call: • Edmonton (780) 407-8822
• Winnipeg (204) 787-2071
(403) 955-7211
• Saskatoon (306) 655-1000
• Calgary
If you cannot reach the Cardiologist on call or are worried about your child: take them to the nearest emergency room or call 911.
54 Stollery Congenital Heart Program
Notes
This material is for information purposes only. It should not be used in place of medical advice, instruction, and/or treatment. If you have questions, speak with your Doctor or appropriate healthcare provider.
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