These slides are the exclusive property These slides are the exclusive property of Kids of Courage. Reproduction, of Kids of Courage. Reproduction,

duplication or copying of any kind is duplication or copying of any kind is strictly prohibited without the express strictly prohibited without the express written consent of the organizationwritten consent of the organization’’s s

administrationadministration

Kids of Courage- Medical Kids of Courage- Medical OrientationOrientation

Medical Team SupervisorsMedical Team SupervisorsPhysicians-Dr. Stuart DitchekPhysicians-Dr. Stuart Ditchek

Paramedics-Howie KafkaParamedics-Howie KafkaNursing-Sara Miriam KaplanNursing-Sara Miriam Kaplan

General RulesGeneral Rules

• Never panicNever panic• Call for help immediatelyCall for help immediately• Communicate concernsCommunicate concerns• Carry all necessary equipment (ie G-Carry all necessary equipment (ie G-

tube extension)tube extension)• Never leave camper unsupervisedNever leave camper unsupervised• Never violate confidentialityNever violate confidentiality• Frequent hand washingFrequent hand washing

Camper DescriptionsCamper Descriptions

• Wide variety of diagnosesWide variety of diagnoses

• Most campers cognitively normalMost campers cognitively normal

• Not all campers are fully aware of Not all campers are fully aware of diagnosis detailsdiagnosis details

• Most will assist with their own careMost will assist with their own care

Partial Overview of Partial Overview of DiagnosesDiagnoses• Familial Dysautonomia(FD)Familial Dysautonomia(FD)• Muscular DystrophyMuscular Dystrophy• Nemaline MyopathyNemaline Myopathy• Spina BifidaSpina Bifida• StrokeStroke• CancerCancer• Glycogen Storage Disease 1AGlycogen Storage Disease 1A• Spinal Cord Injury with ParalysisSpinal Cord Injury with Paralysis• Organ Transplantation (heart, liver , lung)Organ Transplantation (heart, liver , lung)• Seizure disordersSeizure disorders• Metabolic disordersMetabolic disorders• And many othersAnd many others

Wheelchair NeedsWheelchair Needs

• AlwaysAlways lock wheels when stationary or lock wheels when stationary or transferringtransferring

• NeverNever run with wheelchair run with wheelchair• NeverNever allow wheelchair contact with others allow wheelchair contact with others• LearnLearn the chairs mechanisms and the chairs mechanisms and

portabilityportability• Most Most campers will use wheelchairs on day campers will use wheelchairs on day

tripstrips• AlwaysAlways use safety belt use safety belt

Emergency Emergency CommunicationsCommunications• All head and medical staff carry cell All head and medical staff carry cell

phones and radios 24/7phones and radios 24/7

• AlwaysAlways call when in doubt call when in doubt

• AlwaysAlways give your location at start of call give your location at start of call

• Keep your contact sheet with you at all Keep your contact sheet with you at all timestimes

• Have your campers profile with you at Have your campers profile with you at all timesall times

Phone Contact NumbersPhone Contact Numbers

• 24/7 emergency 516-612-884424/7 emergency 516-612-8844

• Non-urgent infirmary dial room Non-urgent infirmary dial room 424/426424/426

• Save all numbers in your phonesSave all numbers in your phones

Infirmary HoursInfirmary Hours

• 7:00AM- 12:00AM7:00AM- 12:00AM

• Be considerate to the nurses and Be considerate to the nurses and respect those hours, pleaserespect those hours, please

General Care RulesGeneral Care Rules

• Wash hands frequentlyWash hands frequently• Hydrate yourself and your camper Hydrate yourself and your camper

frequentlyfrequently• Sleep when you can (curfew)Sleep when you can (curfew)• Eat wellEat well• Alert medical/head staff if you or your Alert medical/head staff if you or your

camper doncamper don’’t feel wellt feel well• Hats and sunscreen mandatory when Hats and sunscreen mandatory when

outdoorsoutdoors

In-flight Care IssuesIn-flight Care Issues

• Certain campers fly with oxygen Certain campers fly with oxygen supplementationsupplementation

• Medical team will supervise in-flight careMedical team will supervise in-flight care• Hydration very importantHydration very important• Specific FD care in-flight (eye care etc…) Specific FD care in-flight (eye care etc…) • Stay seated as much as possibleStay seated as much as possible• Accompany camper to bathroom, do not lock Accompany camper to bathroom, do not lock

door if camper is in bathroom alonedoor if camper is in bathroom alone• Notify team immediately if camper has color Notify team immediately if camper has color

change, sudden cough or difficulty breathing change, sudden cough or difficulty breathing

Seizure CareSeizure Care

• Suspect seizure if uncontrollable shaking Suspect seizure if uncontrollable shaking or twitching movements of extremities or twitching movements of extremities or face, or eye blinking, staring or poorly or face, or eye blinking, staring or poorly responsiveresponsive

• Alert head or medical staff Alert head or medical staff immediatelyimmediately• Do not panicDo not panic• Do not leave your camperDo not leave your camper• Lie camper down on floor or bed if Lie camper down on floor or bed if

possiblepossible

Relax!!Relax!!

• Safe care is what KOC is all aboutSafe care is what KOC is all about

• We have a great track record of fun We have a great track record of fun and safetyand safety

• There is always help availableThere is always help available

• The medical team is there for you The medical team is there for you and your camper- always!and your camper- always!

MedicationsMedications

• All meds kept in infirmary except All meds kept in infirmary except special exceptionspecial exception

• Meds distributed at each meal by Meds distributed at each meal by nursesnurses

• See your nurse every mealSee your nurse every meal

Arrival DayArrival Day

• Upon hotel arrival, make it over to the Upon hotel arrival, make it over to the infirmary with your camperinfirmary with your camper

• Be patient after dinner, logistics-medical-Be patient after dinner, logistics-medical-nursing will get you set up before bedtimenursing will get you set up before bedtime

• Medical team makes rounds Medical team makes rounds everyevery night on night on every every campercamper

• Infirmary has loads of supplies for you, just Infirmary has loads of supplies for you, just askask

• Make special requests to YOUR DHMake special requests to YOUR DH

Familial Dysautonomia Familial Dysautonomia ModuleModule• Please read through manual if you are an FD Please read through manual if you are an FD

counselorcounselor• No need to memorizeNo need to memorize• All FD campers have All FD campers have ““crisiscrisis”” management management

sheetssheets• Never allow your FD camper to go to the Never allow your FD camper to go to the

bathroom unaccompanied-stand outside bathroom unaccompanied-stand outside unlocked bathroom door in event of fainting unlocked bathroom door in event of fainting episodeepisode

• Never allow your FD camper to dive under Never allow your FD camper to dive under water. This carries potential danger water. This carries potential danger

Familial DysautonomiaFamilial Dysautonomia

• Defect in nerve cell developmentDefect in nerve cell development• Sensory and autonomic dysfunctionSensory and autonomic dysfunction• Deficits in pain, temperature and taste sensationDeficits in pain, temperature and taste sensation• Autonomic dysfunction-blood pressure, salivation, Autonomic dysfunction-blood pressure, salivation,

swallowing, digestion, body temperature, lack of tearsswallowing, digestion, body temperature, lack of tears• Scoliosis (spinal curvature)Scoliosis (spinal curvature)• Frequent lung infectionsFrequent lung infections• Most with feeding tubes via stomach and Most with feeding tubes via stomach and

fundoplication (wrapping of lower esophagus and upper fundoplication (wrapping of lower esophagus and upper stomach)stomach)

• Limited or complete restriction of oral liquids and solidsLimited or complete restriction of oral liquids and solids

Gastrostomy TubesGastrostomy Tubes

• We got loads of em!!!!We got loads of em!!!!

Spina BifidaSpina Bifida

• Birth defect involving incomplete closure of Birth defect involving incomplete closure of vertebral bodies (back bones) and spinal vertebral bodies (back bones) and spinal cord damage cord damage

• Partial muscle paralysis and sensory Partial muscle paralysis and sensory deficitsdeficits

• Functional range from ambulatory to Functional range from ambulatory to wheelchair dependencewheelchair dependence

• Urinary and bowel care is criticalUrinary and bowel care is critical

• Frequent urinary infectionsFrequent urinary infections

Seizure DisorderSeizure Disorder

• Wide range of symptoms including Wide range of symptoms including uncontrollable shaking extremities, uncontrollable shaking extremities, twitching, lip smacking, blinking, twitching, lip smacking, blinking, ””blanking outblanking out’’, loss of consciousness and , loss of consciousness and othersothers

• Many campers have seizure disorder as Many campers have seizure disorder as part of their primary medical issuespart of their primary medical issues

• Most seizures are self-limiting, some Most seizures are self-limiting, some require emergency medicationrequire emergency medication

Nemaline MyopathyNemaline Myopathy

• Disorder of muscle functionDisorder of muscle function

• Muscle weakness of varying severityMuscle weakness of varying severity

• Some ambulate, most needs Some ambulate, most needs wheelchair assistancewheelchair assistance

• Breathing difficulties with advanced Breathing difficulties with advanced diseasedisease

• At-risk for lung infectionsAt-risk for lung infections

Muscular DystrophyMuscular Dystrophy

• Motor muscle disorderMotor muscle disorder• DucheneDuchene’’s variant most commons variant most common• Progressive motor muscle paralysisProgressive motor muscle paralysis• Late disease with breathing difficultiesLate disease with breathing difficulties• Most require wheelchair assistance by Most require wheelchair assistance by

adolescenceadolescence• At-risk for lung infections and At-risk for lung infections and

congestive heart failurecongestive heart failure

Cerebral PalsyCerebral Palsy

• A non-progressive movement disorderA non-progressive movement disorder

• Most affected individuals have Most affected individuals have increased muscle tone (spasticity)increased muscle tone (spasticity)

• Varying degrees of severityVarying degrees of severity

• Articulation difficulty should Articulation difficulty should notnot be be confused with cognitive delayconfused with cognitive delay

• Many affected are extremely bright Many affected are extremely bright

Question Module #1Question Module #1

In the event that a camper collapses, the first course of action should beIn the event that a camper collapses, the first course of action should be

1)1) Call for help immediatelyCall for help immediately

2)2) Leave your camper and look for helpLeave your camper and look for help

3)3) Look through your camper profile to check on specific instructionsLook through your camper profile to check on specific instructions

4)4) Start CPRStart CPR

Answer: 1Answer: 1

Question Module #2Question Module #2

If your camper insists that you ignore specific instructions for care, you If your camper insists that you ignore specific instructions for care, you shouldshould

1)1) Accept their directions without confirmingAccept their directions without confirming

2)2) Call the camperCall the camper’’s parents to confirm the changes parents to confirm the change

3)3) Discuss the discrepancy immediately with a medical staff memberDiscuss the discrepancy immediately with a medical staff member

4)4) Ignore the camperIgnore the camper’’s concerns without double checkings concerns without double checking

Answer:3Answer:3

Question Module #3Question Module #3

Signs of dehydration includes:Signs of dehydration includes:

1)Headache1)Headache

2)Dizziness2)Dizziness

3)Color change3)Color change

4)Rapid heart rate4)Rapid heart rate

5)All of the above 5)All of the above

Answer:5Answer:5

Question Module #4Question Module #4

When assisting your camper in transferring from the wheelchair to a bedWhen assisting your camper in transferring from the wheelchair to a bed

1)Move the wheelchair as close to the bed as possible without locking 1)Move the wheelchair as close to the bed as possible without locking the wheelsthe wheels

2)Hold the chair steady as the camper stands up from a sitting position2)Hold the chair steady as the camper stands up from a sitting position

3)Move the chair directly next to the bed and then lock both wheels 3)Move the chair directly next to the bed and then lock both wheels before transferringbefore transferring

4)Lock only the wheel immediately adjacent to the bed and then transfer4)Lock only the wheel immediately adjacent to the bed and then transfer

Answer:3Answer:3

Question Module #5Question Module #5

Campers with Familial Dysautonomia all require eye care with lubricating Campers with Familial Dysautonomia all require eye care with lubricating drops or ointment frequently throughout the day and overnight. This drops or ointment frequently throughout the day and overnight. This requirement is absolutely critical becauserequirement is absolutely critical because

1)They tend to blink frequently1)They tend to blink frequently

2)They do not make the normal volume of tears and this puts them at-risk for 2)They do not make the normal volume of tears and this puts them at-risk for corneal abrasionscorneal abrasions

3)They get frequent eye infections3)They get frequent eye infections

4)The eye drops improve their visual acuity 4)The eye drops improve their visual acuity

Answer:2Answer:2

Question Module #6Question Module #6

Wheelchair safety includesWheelchair safety includes

1)Always locking wheels when transferring from the wheelchair to any 1)Always locking wheels when transferring from the wheelchair to any positionposition

2)Never running with the camper in the wheelchair2)Never running with the camper in the wheelchair

3)Always using the seat belt (safety belt) when camper is in the chair3)Always using the seat belt (safety belt) when camper is in the chair

4)Avoiding collisions with anybody in vicinity of the wheelchair as it can 4)Avoiding collisions with anybody in vicinity of the wheelchair as it can cause injurycause injury

5)All of the above 5)All of the above

Answer:5Answer:5

Question Module #7Question Module #7

Signs of a seizure includes:Signs of a seizure includes:

1)Uncontrollable shaking of the trunk or extremities1)Uncontrollable shaking of the trunk or extremities

2)Facial twitching 2)Facial twitching

3)Loss of consciousness3)Loss of consciousness

4)Staring or gazing without verbal response4)Staring or gazing without verbal response

5)All of the above5)All of the above

Answer:5Answer:5

Question Module #8Question Module #8

If your camper is fed or takes medications through a gastrostomy tube:If your camper is fed or takes medications through a gastrostomy tube:

1)You should share extension tubing and a large administration syringe 1)You should share extension tubing and a large administration syringe with other camperswith other campers

2)Always carry your campers extension tubing and syringe with you 2)Always carry your campers extension tubing and syringe with you everywhere you goeverywhere you go

3)Use a new extension tubing for each feeding or medication 3)Use a new extension tubing for each feeding or medication administrationadministration

4)Ask your camper to bring the extension tube with them as needed 4)Ask your camper to bring the extension tube with them as needed

Answer:2Answer:2

Question Module #9Question Module #9

If your camper had FD or a known seizure disorder, you should do the If your camper had FD or a known seizure disorder, you should do the following when they use the bathroom:following when they use the bathroom:

1)Have the camper lock the bathroom door and ask them to call you if they 1)Have the camper lock the bathroom door and ask them to call you if they are having difficultyare having difficulty

2)Ask your camper to close the door without locking it so that you can access 2)Ask your camper to close the door without locking it so that you can access the bathroom in the event of a fall or a fainting spell while respecting their the bathroom in the event of a fall or a fainting spell while respecting their privacy throughoutprivacy throughout

3)Allow your camper to lock the door without specific instructions3)Allow your camper to lock the door without specific instructions

4)Never knock on the door to check up on your camper 4)Never knock on the door to check up on your camper

Answer:2Answer:2

Question module #10Question module #10

In the event that a bystander asks you specifically what your camperIn the event that a bystander asks you specifically what your camper ’’s diagnosis s diagnosis is:is:

1)You should ignore the question with no response1)You should ignore the question with no response

2)You should politely explain that confidentiality rules preclude discussing 2)You should politely explain that confidentiality rules preclude discussing specifics of the camperspecifics of the camper’’s diagnosiss diagnosis

3)You should ask the camper to answer the question directly3)You should ask the camper to answer the question directly

4)You should tell the individual what the diagnosis is and details of the illness 4)You should tell the individual what the diagnosis is and details of the illness

Answer:2 Answer:2