The Pediatric Palliative Care Coalition (PPCC) Is Pleased . PDF Free Download

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The Pediatric Palliative Care Coalition (PPCC) is pleased to provide this Care Plan Book and hopesthat it will make your job as a caregiver a little bit easier. We understand how overwhelming and difficultthat task can be. Our goal is that this reference guide, to be used by families, caregivers and medicalprofessionals, will become an invaluable source for you and everyone involved in your journey.We would like to acknowledge and thank the National Center for Medical Home Implementation for their extensive list of helpful forms. In order to createthis Care Plan Book, a team of medical professionals, parents and volunteers reviewed and adapted the forms they felt would be most helpful to our families.All of the original forms, and many more, are available on their website:www.medicalhomeinfo.org/for families/care notebook/We would also like to thank the numerous volunteers who have worked tirelessly to make this comprehensive book a reality, including many different voices,both medical professionals and family members. Thanks, as well, for the beautiful design work by Kristi Schaefer and Scot Wallace at SWZ Design.The Pediatric Palliative Care Coalition is a statewide organization that provides resources for families, volunteers and medical professionals caring for childrenwith life-limiting illnesses. Our goal is to provide a clearer path for children and their families coping with this difficult, life-altering experience. We strive to providecomprehensive, up-to-date information on pediatric palliative and hospice care across Pennsylvania through education, advocacy,information/resources and volunteerism.We count on the support and participation of all those across the state who are involved in pediatric palliative and hospice care. We would love to have you join us!To find out more information about PPCC and to learn about our activities or to make a donation, please visit our website at www.ppcc-pa.org.Betsy HawleyExecutive Director

Key ContactsFamilyParent/GuardianAddressHome Phone Work PhoneCell Phone EmailParent/GuardianAddressHome Phone Work PhoneCell Phone EmailRelative/RelationshipPhone #Relative/RelationshipPhone #Relative/RelationshipPhone #MedicalEmergency Poison Control #Fire # Police #PharmacyPhone #TherapyPhone #HospitalPhone #SchoolSchoolPhone #SchoolPhone #Doctor/SpecialtyDoctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Doctor/SpecialtyPhone #Special TransportationMedical Appts/Phone#School/Phone#Utilities(contact each for a Medical Necessity Form)Gas Phone # Acct #Electric Phone # Acct #Water Phone # Acct #Phone Phone # Acct #OtherPhone #OtherPhone #Child’s NameDate Last Revised:Date of Birth

Doctors/TherapistsDoctorsPrimary CareLocationAddressPhone Fax EmailEmergencySpecialistLocationAddressPhone Fax EmailEmergencySpecialistLocationAddressPhone Fax EmailEmergencySpecialistLocationAddressPhone Fax EmailEmergencySpecialistLocationAddressPhone Fax EmailEmergencySpecialistLocationAddressPhone Fax EmailEmergencyProfessional ResourcesNameLocationAddressPhone Fax EmailEmergencyNameLocationAddressPhone Fax EmailEmergencyNameLocationAddressPhone Fax EmailEmergencyNameLocationAddressPhone Fax EmailEmergencyNameLocationAddressPhone Fax EmailEmergencyChild’s NameDate Last Revised:Date of Birth

Pharmacies/HospitalsPharmaciesMainAddressPhone Fax EmailBusiness Hours ContactOtherAddressPhone Fax EmailBusiness Hours ContactOtherAddressPhone Fax EmailBusiness Hours ContactOtherAddressPhone Fax EmailBusiness Hours ContactHospitalsMainAddressMedical Record #Hospital Operator #Emergency Department #Contact/TitlePhone Fax EmailOtherAddressMedical Record #Hospital Operator #Emergency Department #Contact/TitlePhone Fax EmailNotesOtherAddressPhone Fax EmailBusiness Hours ContactOtherAddressPhone Fax EmailBusiness Hours ContactChild’s NameDate Last Revised:Date of Birth

TransportationAmbulanceCompanyAddressPhone Fax EmailSpecial Transportation (to and from medical/therapy appointments)ContactAgencyAddressPhone Fax EmailImportant Information (bus route, rules regarding pick-up, etc.)Special Transportation (to and from school)ContactAgencyAddressPhone Fax EmailImportant Information (bus route, rules regarding pick-up, etc.)NotesSpecial Transportation (to and from medical/therapy appointments)ContactAgencyAddressPhone Fax EmailImportant Information (bus route, rules regarding pick-up, etc.)Child’s NameDate Last Revised:Date of Birth

School/DaycareAdditional Contacts(PT, OT, Nutritionist, Therapist, etc.)School NameAddressPhone Fax EmailNameTitlePhone Fax EmailNursePhone #NameTitlePhone Fax EmailTeacherPhone #TeacherPhone #PrincipalPhone #Guidance CounselorPhone #Special Education DirectorPhone #Transportation ContactPhone #Homebound CoordinatorPhone #NameTitlePhone Fax EmailNameTitlePhone Fax EmailNameTitlePhone Fax EmailNameTitlePhone Fax EmailNameTitlePhone Fax EmailNameTitlePhone Fax EmailChild’s NameDate Last Revised:Date of Birth

NotesChild’s NameDate Last Revised:Date of Birth

CaregiverParent/GuardianWill be at phone cellWill be home atSpecial instructionsIn homeExtra equipment/supplies are locatedFuse box or breaker box is locatedFire extinguisher is locatedFlashlights are locatedFor EMT or ER personnelAllergiesBaseline dataSignificant events in the past 48 hoursMedicationsPulse rate Site best takenBP Site best takenTemp Site best takenResp rate/minute Oxygen saturationSkin color Best blood draw sitePupilsName Strength Dosage Time to be givenCall 911 in case of emergency.Child’s Name Date of BirthHome PhoneAddressPrimary Care Doctor/PhoneOther person to call in case of emergencyCommunicationPreferred method LanguageHow child expresses pain Start Typing HereThese things can upset or overstimulate my child(loud noises, bright lights, medical equipment, separation from parents/special item, touch, etc.)These things can help calm my childInsuranceCompany Policy #Policyholder Name Group #Child’s NameDate Last Revised:Date of Birth

CaregiverParent/GuardianWill be at phone cellWill be home atSpecial instructionsIn homeExtra equipment/supplies are locatedFuse box or breaker box is locatedFire extinguisher is locatedFlashlights are locatedFor EMT or ER personnelAllergiesBaseline dataSignificant events in the past 48 hoursMedicationsPulse rate Site best takenBP Site best takenTemp Site best takenResp rate/minute Oxygen saturationSkin color Best blood draw sitePupilsName Strength Dosage Time to be givenCall 911 in case of emergency.Child’s Name Date of BirthHome PhoneAddressPrimary Care Doctor/PhoneOther person to call in case of emergencyCommunicationPreferred method LanguageHow child expresses painThese things can upset or overstimulate my child(loud noises, bright lights, medical equipment, separation from parents/special item, touch, etc.)These things can help calm my childInsuranceCompany Policy #Policyholder Name Group #Child’s NameDate Last Revised:Date of Birth

Child’s InsuranceCoveragePrimaryWhat is covered and co-pay for the following:Parent/GuardianProcedureChild’s Name Date of BirthDoctor’s Office VisitsInsurance CompanyER CareAddress City State ZipSurgeriesContact/Phone #Outpatient Hospital CareName of Insured Policy # Group #Doctor’s Hospital VisitsPolicy Effective DatesHospitalizationsEmployer NameDurable Medical EquipmentAddress City State ZipOrthotic/Prosthetic DevicesrimaryMedical SuppliesCoveredCo-PayPrescribed MedicationsSecondaryHome CareParent/GuardianSkilled Nursing CareChild’s Name Date of BirthMedical TreatmentInsurance CompanyTherapy (kind)Address City State ZipOtherContact/Phone #Diagnostic TestsName of Insured Policy # Group #LaboratoryPolicy Effective DatesX-raysEmployer NameOtherAddress City State ZipAmbulanceDental CareMental Health CareInpatientOutpatientWhat is not covered by insurance:Child’s NameDate Last Revised:Date of Birth

NotesChild’s NameDate Last Revised:Date of Birth

Medical Bill Tracking FormDateProviderServiceCostInsurance Company Paid/DateFamily Paid/DateChild’s NameDate Last Revised:Date of Birth

Income Tax Expense RecordDateExpensesMedicalTravel (To/From/Mileage/Other)CostChild’s NameDate Last Revised:Date of Birth

Medical Supplies/EquipmentItem Description/Product CodeItem Description/Product CodeProvider/Vendor NameProvider/Vendor NameContact PersonContact PersonPhone Fax emailPhone Fax emailPrescribed byPrescribed byReason PrescribedReason PrescribedContact for Service/Insurance ApprovalContact for Service/Insurance ApprovalPhonePhoneComments (kind of services needed, part numbers, costs, etc.)Comments (kind of services needed, part numbers, costs, etc.)Item Description/Product CodeItem Description/Product CodeProvider/Vendor NameProvider/Vendor NameContact PersonContact PersonPhone Fax emailPhone Fax emailPrescribed byPrescribed byReason PrescribedReason PrescribedContact for Service/Insurance ApprovalContact for Service/Insurance ApprovalPhonePhoneComments (kind of services needed, part numbers, costs, etc.)Comments (kind of services needed, part numbers, costs, etc.)Child’s NameDate Last Revised:Date of Birth

Family Health HistoryBiological Family HistoryFamily Health HistoryMother’s and Father’s Health HistoryIs there anyone in the family with a similar disability or chronic illness as your child?o Yeso NoDiabeteso Mothero FatherHigh Blood Pressureo Mothero FatherSmokero Mothero FatherKidney Problemso Mothero FatherAsthmao Mothero FatherIs there anyone in the family with:Epilepsy, Seizureso Mothero FatherGenetic conditionso Yeso NoBirth Defects*o Mothero FatherHeart problemso Yeso NoDeafnesso Mothero FatherDevelopmental disabilitieso Yeso NoDeath under 50 years of ageo Mothero FatherSeizure disordero Yeso NoOther*o Mothero FatherCerebral Palsyo Yeso NoDES Useo Mothero FatherDiabeteso Yeso NoMenstrual Problems*o Mothero FatherBlood disordero Yeso NoHeart Attack under 60 years of ageo Mothero FatherCancero Yeso NoStrokeo Mothero FatherVision and/or hearing impairmento Yeso NoStomach/Intestinalo Mothero FatherMetabolic or nutritional disordero Yeso NoIntellectual Disabilityo Mothero FatherCleft Palateo Yeso NoBlood Diseaseo Anemiao Sickle CellOthero Yeso NoAllergieso Mothero FatherBone/Joint Problemso Mothero FatherHas anyone in the family had genetic testing or counseling?High Cholesterolo Mothero Fathero YesCancer (Type )o Mothero FatherUrinary Problemso Mothero FatherMuscle/Nerve Diseaseo Mothero FatherIf yes, who/what:o Other*o No o Don’t knowRelationship to childIf yes, please describe:Are there any other family health information that might be related to your child’sspecial health needs?*Please explain:Child’s NameDate Last Revised:Date of Birth

Birth HistoryChild’s NameHow many months were you pregnant when you first saw a doctor?Date of Birth / / Birthweight LengthBirth Order (1st, 2nd, etc.)How many times did you visit the doctor during your pregnancy?ObstetricianDrugs/medications taken during pregnancy:Address City State ZipPhone Cell EmailAny illnesses or problems during the pregnancy?Hospital where child was borno Yeso No If yes, please describe:Address City State ZipPhoneWas the baby full-term (37 weeks or more)?Name of child’s primary doctoro YesAddress City State ZipLength of laboro NoIf no, number of weeks of gestation?PhoneDelivery method: o Normal o Caesarean o Breech o Precipitate (sudden)NotesChild’s Apgar scores at 1 minute ; at 5 minutesChild’s condition at birthChild was fed: breast milko formula (brand )oChild’s age at hospital dischargeChild was in the hospital from / / to / /Child’s NameDate Last Revised:Date of Birth

Eating HistoryWhen your child came home from the hospital, what type of food did he/she eat:How long does it take your child to finish a bottle or eat a meal?o breast milk o regular formula o special formula o otherChanges in feedingBreast to bottle child’s age why change?Are there any problems (vomiting, choking, swallowing, refusing to eat, diarrhea, etc.)?Formula change child’s age why change and changed to what?NotesBottle to cup child’s age why change?Started solid food child’s ageFood allergiesTexturesNPO & Tube FeedingsOther changesChild’s NameDate Last Revised:Date of Birth

MilestonesDevelopmental MilestonesNotesThis list can be used as a guide and for any questions you may have for your child’sphysician.AgeNotes/QuestionsSmiledLaughed out loudHeld up headRolled overSat upSat aloneGot first toothStarted solid foodDrank from glass/cupUsed utensilsCrawledSpoke first wordWaved “bye”WalkedWalked aloneSpoke first sentenceIndicated needToilet trained – bladderToilet trained – bowelDressed selfWashed selfOtherOtherToiletChild’s NameDate Last Revised:Date of Birth

Dental HistoryNotesDentistAddress City State ZipPhone Cell EmailDental SpecialistAddress City State ZipPhone Cell EmailAll children should have routine dental care; such care may be even more importantwhen your child has a special health care need. Consult with your family dentist oryour child’s medical specialist to determine if specialized dental services are required.Before the dental exam, the dentist should have information about your child’s medicalcondition and current care. Discuss any precautions recommended by your child’smedical specialist as well as provide a list of current medications your child is taking.o Dentist has been informed of medical condition, medications, allergies (latex orother) and medical specialist’s recommendations.DateAppointment TimeWhat Occurred at AppointmentFollow-up Information (Sedation provided/Antibiotics Given/Needed)Child’s NameDate Last Revised:Date of Birth

Test ResultsOthero Blood o X-ray o CT o MRI o Other Date Performedo Blood o X-ray o CT o MRI o Other Date PerformedDoctor who ordered testDoctor who ordered Location of Test RecordLocation of Test RecordPhonePhoneCommentsCommentso Blood o X-ray o CT o MRI o Other Date Performedo Blood o X-ray o CT o MRI o Other Date PerformedDoctor who ordered testDoctor who ordered Location of Test RecordLocation of Test RecordPhonePhoneCommentsCommentsChild’s NameDate Last Revised:Date of Birth

Illness/Infection/Injury HistoryIllness/Infection/InjuryDateDurationDrugs TakenPhysicianLocationTreatmentChild’s NameDate Last Revised:Date of Birth

DiagnosesDiagnosisAbbreviation Also CalledPhysician Who DiagnosedPhysician’s SpecialtyDate of DiagnosisChild’s NameDate Last Revised:Date of Birth

Immunization and Allergy patitis BDiptheria/Tetanus (DT)Diptheria/Pertussis/Tetanus (DPT)TetanusPolioInfluenza Type BMeasles/Mumps/Rubella (MMR)Measles (Rubeola)MumpsRubella (3-day Measles)Varicella ZosterMeningococcal Conjugate VaccineOther:TB Skin Tests (PPD)Lead ScreeningOther:Child’s NameDate Last Revised:Date of Birth

Appointments/Meetings LogUse this form to keep track of meetings and appointment you have about your child’s health care.Call/MeetingDate/TimeName of Person/AgencyContact InformationWhat was Discussed/DecidedChild’s NameDate Last Revised:Date of Birth

ions/Results/Comments/Follow-upChild’s NameDate Last Revised:Date of Birth

Hospital StaysDate of Admission / /Date of Discharge / /Date of Admission / /Date of Discharge / /Reason for AdmissionReason for AdmissionHospitalHospitalAddress City State ZipAddress City State ZipPhonePhoneDoctor/SurgeonDoctor/SurgeonType of Surgery/ProcedureType of Surgery/ProcedureOutcomeOutcomeDate of Admission / /Date of Discharge / /Date of Admission / /Date of Discharge / /Reason for AdmissionReason for AdmissionHospitalHospitalAddress City State ZipAddress City State ZipPhonePhoneDoctor/SurgeonDoctor/SurgeonType of Surgery/ProcedureType of Surgery/ProcedureOutcomeOutcomeChild’s NameDate Last Revised:Date of Birth

NotesChild’s NameDate Last Revised:Date of Birth

ER VisitsDateHospital/Medical FacilityDoctorAdmitted?Results/CommentsChild’s NameDate Last Revised:Date of Birth

Tips for a Good VisitThis information can be helpful for the doctor and others to know.NotesChild’s NicknameMy child is verbal o Yes o NoMy child likes it when you:My child does not like it when you:If my child does not want to do something, here are things that can help:Child’s NameDate Last Revised:Date of Birth

Things to Remember for Next VisitDateChild’s NameDate Last Revised:Date of Birth

Daily Treatments/Regimen(If you have a Plan of Care, please insert copy here.)Bowel/Bladder RegimenVital Signs (Frequency)Respiratory Treatments (O2, trach, vent, etc.)Adaptive Equipment (wheelchair, braces, splints, communication devices, etc.)TrachFeeding TubeChild’s NameDate Last Revised:Date of Birth

Seizure ActivityDate/TimeDescriptionDurationTreatment Given (Breathing/Meds)Child’s NameDate Last Revised:Date of Birth

Catheterization InformationDateTimeAmount of Urine CommentsDateTimeAmount of Urine CommentsChild’s NameDate Last Revised:Date of Birth

Albuterol, Nebulizer, and Vest Treatments DateTimeNeb GivenO2sat PreO2 Sat PostVest Given O2sat PreO2 Sat PostCommentsInitialsChild’s NameDate Last Revised:Date of Birth

Blood Glucose RecordDateTimeBlood GlucoseInsulin (Type and Dose)SiteSymptomsActions TakenChild’s NameDate Last Revised:Date of Birth

Treatment/Therapy Routines(Describe any special routines and time – suctioning, skin care, therapies, postural drainage, etc.)RoutineDescriptionTime PerformedChild’s NameDate Last Revised:Date of Birth

Therapy Noteso Physicalo Occupationalo Developmentalo Nutritiono Speech o Vision o HearingActivityCommentsChild’s NameDate Last Revised:Date of Birth

Baseline DataNormal Vital SignsPulse rate Site best takenBP Site best takenTemp Site best takenResp rate/minuteOxygen saturationSkin colorBest blood draw sitePupils (normal, dilated, constricted, oryooHeart/Blood (include recent blood counts)ooGastrointestinalooRespiratory (describe breath sounds)ooGentourinaryooMuscoskeletalooBaseline Xray ’s NameDate Last Revised:Date of Birth

Normal StatusAreas to CheckNormal Status isN/ARashDrainageNoseEyesEarsFontanelsSeizure activityVerbal skillsActivity levelVent dependent/trach/C-papMotor skillsUpper body extremitiesLower body extremitiesStoolUrineFeeding behaviors/SourceOstomy sitesBehavior/attitudeSleeping patternsBlood sugarsCommunicationOther:Child’s NameDate Last Revised:Date of Birth

AllergiesFood/Drug/OtherReactionWhat To Do (Give EpiPen , Meds, Call 911, etc.)Date NotedChild’s NameDate Last Revised:Date of Birth

All About MeMy NameI Iike to do these things in my free timeMy NicknameI live ato Homeo Schoolo Foster Homeo Hospitalo OtherFamily member names (first name/last name/relationship)I usually go to bed atBefore bed, I usuallyThings I need help with (i.e. brushing teeth, washing, dressing, etc.)Close friends, babysitters, neighbors (first name/last name/relationship)Things I can do myselfPets (Type/Name)OtherFavorite FoodsLeast Favorite FoodsFavorite Songs/MusicFavorite Toys/GamesFavorite Hobbies/Other ThingsFavorite TV Shows/Computer GamesFavorite FriendsFavorite PeopleChild’s NameDate Last Revised:Date of Birth

PreferencesCommunicationCan she/he be understood by others?Preferred language/methods of communication:Noteso Talk o Sign o TTY o Picture board o Computer keyboard o Gesture/facialo OtherAre there specific words/gestures that have special meaning?Name of interpreter if required:Is your child deaf/hearing impaired?Is your child legally blind/visually impaired?Child’s EthnicityFamily’s preferred language:Family’s religious beliefs/customs that may affect treatment:Child’s likes and dislikChild’s NameDate Last Revised:Date of Birth

Personal Care and HygieneIndependentThings that I can do independently (i.e. brushing teeth)Other helpful information (i.e. shoe and clothing size, menstrual cycle, etc.)AssistanceThings that I need assistance withChild’s NameDate Last Revised:Date of Birth

Home Health AgencyAgency NameNotesContact PersonAddressPhone Fax EmailService(s) to be provided (i.e. nursing, therapy, home health aide, etc.)ServiceFrequency (visits/week)Hours/VisitLast Authorization DateChild’s NameDate Last Revised:Date of Birth

Home ScheduleDayTimeName (Home Health ThursdayFridaySaturdaySundayChild’s NameDate Last Revised:Date of Birth

Caregiver Task SheetTaskMTWThFSaSuChild’s NameDate Last Revised:Date of Birth

Respite Care LogRespite Care ProviderRespite Care ProviderDate of ServiceDate of ServiceAgency NameAgency NameContact PersonContact PersonAddressAddressPhone Fax EmailPhone Fax EmailRespite Care ProviderRespite Care ProviderDate of ServiceDate of ServiceAgency NameAgency NameContact PersonContact PersonAddressAddressPhone Fax EmailPhone Fax EmailRespite Care ProviderRespite Care ProviderDate of