Sick Kids' Family Journal

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1 Sick Kids' Family Journal Working together sharing all that we know This Journal belongs to University Avenue, Toronto, ON, Canada M5G 1X8

2 How to Use Your Sick Kids Family Journal What is the Sick Kids Family Journal? The Sick Kids Family Journal is an easy-to-use diary in which you record important information about your child s health. The Journal belongs to your family. It is up to you how much to include in the Journal, and how to use the information you record. How can the Sick Kids Family Journal help you? Finding your way around the health care system can be very confusing. Often different people, in different settings, care for your child. The Sick Kids Family Journal will help you keep track of your child s health information and any questions you may have. This will make it easy for you to find and share important information with all members of your child s health care team. Who can read your Sick Kids Family Journal? Your Journal belongs to your family. Who sees it is up to you. You may choose to share some or all of it or you may keep it private. How do I get more pages for my Sick Kids Family Journal? You can get more pages from: CHIP - Sick Kids main floor The hospital wards and clinics from the Internet at Helpful Hints for using the Sick Kids Family Journal Add new information to your Journal whenever there is a change in your child s health care. Encourage your child to add comments or pictures to the Journal. Siblings are also encouraged to add comments or pictures to the Journal. Take your Journal with you to all appointments, both in the hospital and in your community. Regularly review your Journal and take out information that is not needed anymore. Keep this information somewhere where you can find it if you need it. Use the Journal in your own way. Feel free to take out any pages that are not appropriate to your child s health care. The 3 - ring binder allows you to easily add more pages or sections that meet your family s needs. Cover designed by: Robert Murray of Robert A. Murray Graphics Inc or rlmurray@execulink.com Robert s child receives care at Sick Kids. Adapted from the Care Notebook, Children s Hospital & Regional Medical Center, Seattle, WA

3 Personal Information Personal Information Child s Name: Preferred name: Date of Birth: Y M D Health Card Number: HSC Number: Other Hospital Numbers: Hospital Name: Card Number: Family Members Parent/ Guardian Parent/ Guardian Parent/ Guardian Name: Relationship to Child: Phone: Home: Work: Cell: Name: Relationship to Child: Phone: Home: Work: Cell: Name: Relationship to Child: Phone: Home: Work: Cell: Other Household Members: Name Date of Birth Relationship to Child Important Family Information: Preferred Language: Other Languages spoken: Interpreter s Name: Phone:

4 Medical History/Allergies Brief Medical History (Diagnosis, Date): Allergies Remember to include all allergies: Medication, Food, Latex, Other Allergy Reaction (vomiting, hives, swelling etc.) Treatment Comments

5 Childhood Illnesses/Immunizations Childhood Illnesses: (Chicken Pox, Measles, Mumps, Rubella, Whooping Cough, etc.) Childhood Illness Age Date of Diagnosis Y M D Comments and Name of person making diagnosis Immunizations/Vaccination Record You may already have this information on a Yellow Card given to you by your Family Physician. Place a check mark in the box and fill in the date when your child receives the immunization. Date of Vaccination Y M D Age Recommended Age at Vaccination DTaP Polio Hib MMR Td Hep B (3 doses) 2 months Infancy or preadolescence (9-13 yrs) 4 months 6 months 12 months 18 months 4-6 years years every 10 years DTaP Diphtheria, tetanus, pertussis vaccine Hib Haemophilus influenzae type b vaccine MMR Measles, mumps and rubella vaccine Td Tetanus and diphtheria toxoid, adult type Hep B Hepatitis B vaccine Other May include flu shots, chicken pox vaccination, vaccines required for travel etc. Other

6 My Doctors Medical Members of My Health Care Team (doctors, dentists, orthodontists, etc.) Paediatrician/Family Doctor Name: Phone: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day: Doctor HSC Other Hospital Community Name: Clinic Phone: Clinic Day:

7 More Members of My Team More Members of My Health Care Team (HSC and the Community) Think about including your social worker, child life specialist, dietitian, discharge planner, occupational therapist, physical therapist, speech-language pathologist, clinic nurse, nurse practitioner, pharmacist, home nursing agency, contact person, etc. Name: HSC Other Hospital Community Organization Name: Name: HSC Other Hospital Community Organization Name: Name: HSC Other Hospital Community Organization Name: Name: HSC Other Hospital Community Organization Name: Name: HSC Other Hospital Community Organization Name: Name: HSC Other Hospital Community Organization Name:

8 Equipment and Supplies Equipment and Supplies Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Equipment: Description (brand name, size, etc.): Supplier: Contact Person: Phone: Phone: Phone: Phone: Phone: Phone:

9 Care Log This section may be used to keep track of your child s admissions, treatments, surgeries, tests and procedures (i.e. X-rays, CT Scans, MRIs, ECGs etc.) Date Responsible Doctor Hospital/Ward or Clinic Reason for Visit (surgery, test, procedure, treatment) Comments/Outcomes/Discharge Plans/Instructions Corresponding Blood Work/ Test Results in Next Section

10 Blood Work and Test Results Date Who ordered the test? Name and Specialty Test Results and Comments

11 Prescribed Medications Medicine Ordered By Health Care Professional *Name and strength of medicine Who prescribed the medicine? Name and Specialty What is the medicine for? Amount given at each dose Number of times given every day Comments (how your child takes it, reactions etc.) Start Date Finish Date *Medications often have more than one name. Include all the names you know. Medications come in different strengths. Please include the strength of your child s medication when filling in this chart. For example: 1 teaspoon of Tylenol 80 milligrams per milliliter is different than 1 teaspoon of Tylenol 160 milligrams per milliliter

12 Over-the-counter Medications/Remedies Occasional Medicine and Complementary or Alternative Remedies (i.e. Tylenol, Vitamins, Cough Syrup, Echinecea etc.) Name and strength of medicine/ remedy Did someone recommend the medicine? If yes, who? Name and Specialty What is the medicine for? Amount given at each dose Number of times given every day Comments (how your child takes it, reactions etc.) Start Date Finish Date *Medications come in different strengths. Please include the strength of your child s medication when filling in this chart. For example: 1 teaspoon of Tylenol 80 milligrams per milliliter is different than 1 teaspoon of Tylenol 160 milligrams per milliliter

13 Through My Eyes The Through My Eyes section was created to encourage you and your child to express your personal thoughts and feelings. Once filled out, these sheets may help health care professionals to better understand how to meet your child s and families needs. There are separate pages for children, parents and siblings. If your child is too young to fill in the pages, you may want to complete their pages for them. The pages were designed to allow your child to draw pictures if they cannot write. Other parents have found these pages most useful when their child is in the hospital. They fill in the pages and hang them on the wall in their child s hospital room. The sheets may be useful in helping others care for your child if you are unavailable. You may have to redo this section each time your child is admitted to the hospital as your child s needs and your needs may change as your child grows. The blank pages at the end of this section are called My Thoughts & Questions. Your family can record their thoughts, observations, events, and questions in this section.

14 My Page Today s date is: The name I like to be called is: I am years old. My birthday is. Foods I like: I don t like: Toys/games TV shows/movies Books Music More things I want people to know about me are: If I had three wishes, I would wish for:

15 My Page Draw or write your answers to the following questions. Things that make me happy are: I show happiness by: Things that make me sad are: I show sadness by: Things that comfort me are: I show I am comforted by: Things that make me angry are: I show I am angry by: Things that make me scared are: I show I am scared by: Things that worry me are: I show I am worried by:

16 Parent/Guardian Page Today s date is: The name I (parent/guardian) prefer to be called by the members of the health care team is: My schedule is: My child s schedule at home is: My child needs help with: My child s feeding routine is: My child s bathing routine is: My child s sleeping routine is:

17 Parent/Guardian Page Special words our family uses are: (Include special words for body parts, pain, foods, etc.) My child lets you know how they are feeling or thinking by: Things that upset my child are: When my child is upset, things that help are: Other important things that help me and my family are:

18 Brother/Sister Page Today s date is: The name I like to be called is: I am years old. My birthday is. My schedule is: Foods I like: I don t like: Toys/games TV shows/movies Books Music The best thing about visiting the hospital is: The worst thing about visiting the hospital is:

19 Brother/Sister Page Draw or write your answers to the following questions. Things that make me happy are: I show happiness by: Things that make me sad are: I show sadness by: Things that comfort me are: I show I am comforted by: Things that make me angry are: I show I am angry by: Things scare me are: I show I am scared by: Things that worry me are: I show I am worried by: If I had three wishes, I would wish for:

20 Thoughts & Questions Your family can record their thoughts, observations, events etc. in this section. It may be useful to date your entries.

21 Research Participation You may be asked to participate in research studies while your child is at Sick Kids. This form will allow you to keep a record of the research your child is involved in. Date Title of Research Project Reason for Research Name and Phone Number of Research Contact Person

22 Other Information Parent Guidebook The HSC Parent Guidebook contains information that may be helpful while you are at Sick Kids. In the Guidebook you will find maps, important phone numbers, areas of interest in the hospital and tips about making your stay more comfortable. If you do not have a Parent Guidebook, please ask any hospital employee to get you one. The Centre for Health Information and Promotion (CHIP) The Centre for Health Information and Promotion (CHIP), located on the main floor (m296) is open Monday to Friday (9:30-3:30) and has medical, health, safety and child-raising information. CHIP also has a parent workstation which will enable access to the following services: Internet and access, lap top port connection, fax machine to send or receive faxes, and a bell telephone with credit care access to make long distance calls. Hospital Costs While your child is in hospital, medical and surgical costs are covered by your provincial health insurance plan; OHIP (Ontario Health Insurance Plan) in Ontario. However, a number of costs are not covered by OHIP. While your child is a patient you are responsible for: transportation, parking, long distance phone calls, meals for parents, child care for others in the family and accommodation for a parent who is not staying in the child s room. When your child is discharged, the following ongoing costs may also become your responsibility: drugs, equipment, transportation, nursing care in the home, ongoing clinic visits, respite care, dietary needs, specialized day care, extra clothing etc. Many resources exist which may help you to pay for other costs, However, the list is long and some only cover specific types of costs. For more information about which resources may be appropriate to cover your needs, talk to your discharge planner or social worker on the unit. You may call the departments directly: Discharge Planning - (416) Social Work - (416) Centre for Health Information and Promotion - (416)

23 Make-a-Calendar Create your own calendar. Simply put the month and year on the line and fill in the boxes with the date. Then use the calendar to keep track of important dates and appointments. Month Year Monday Tuesday Wednesday Thursday Friday Sat/Sun Month Year Monday Tuesday Wednesday Thursday Friday Sat/Sun

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