Kids of Courage- Medical Orientation

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2. Kids of Courage- Medical Orientation Medical Team Supervisors Physicians-Dr. Stuart Ditchek Paramedics-Howie Kafka Nursing-Sara Miriam Kaplan

3. General Rules • Never panic • Call for help immediately • Communicate concerns • Carry all necessary equipment (ie G-tube extension) • Never leave camper unsupervised • Never violate confidentiality • Frequent hand washing

4. Camper Descriptions • Wide variety of diagnoses • Most campers cognitively normal • Not all campers are fully aware of diagnosis details • Most will assist with their own care

5. Partial Overview of Diagnoses • Familial Dysautonomia(FD) • Muscular Dystrophy • Nemaline Myopathy • Spina Bifida • Stroke • Cancer • Glycogen Storage Disease 1A • Spinal Cord Injury with Paralysis • Organ Transplantation (heart, liver , lung) • Seizure disorders • Metabolic disorders • And many others

6. Wheelchair Needs • Always lock wheels when stationary or transferring • Never run with wheelchair • Never allow wheelchair contact with others • Learn the chairs mechanisms and portability • Most campers will use wheelchairs on day trips • Always use safety belt

7. Emergency Communications • All head and medical staff carry cell phones and radios 24/7 • Always call when in doubt • Always give your location at start of call • Keep your contact sheet with you at all times • Have your campers profile with you at all times

8. Phone Contact Numbers • 24/7 emergency 516-612-8844 • Non-urgent infirmary dial room 424/426 • Save all numbers in your phones

9. Infirmary Hours • 7:00AM- 12:00AM • Be considerate to the nurses and respect those hours, please

10. General Care Rules • Wash hands frequently • Hydrate yourself and your camper frequently • Sleep when you can (curfew) • Eat well • Alert medical/head staff if you or your camper don’t feel well • Hats and sunscreen mandatory when outdoors

11. In-flight Care Issues • Certain campers fly with oxygen supplementation • Medical team will supervise in-flight care • Hydration very important • Specific FD care in-flight (eye care etc…) • Stay seated as much as possible • Accompany camper to bathroom, do not lock door if camper is in bathroom alone • Notify team immediately if camper has color change, sudden cough or difficulty breathing

12. Seizure Care • Suspect seizure if uncontrollable shaking or twitching movements of extremities or face, or eye blinking, staring or poorly responsive • Alert head or medical staff immediately • Do not panic • Do not leave your camper • Lie camper down on floor or bed if possible

13. Relax!! • Safe care is what KOC is all about • We have a great track record of fun and safety • There is always help available • The medical team is there for you and your camper- always!

14. Medications • All meds kept in infirmary except special exception • Meds distributed at each meal by nurses • See your nurse every meal

15. Arrival Day • Upon hotel arrival, make it over to the infirmary with your camper • Be patient after dinner, logistics-medical-nursing will get you set up before bedtime • Medical team makes rounds every night on every camper • Infirmary has loads of supplies for you, just ask • Make special requests to YOUR DH

16. Familial Dysautonomia Module • Please read through manual if you are an FD counselor • No need to memorize • All FD campers have “crisis” management sheets • Never allow your FD camper to go to the bathroom unaccompanied-stand outside unlocked bathroom door in event of fainting episode • Never allow your FD camper to dive under water. This carries potential danger

17. Familial Dysautonomia • Defect in nerve cell development • Sensory and autonomic dysfunction • Deficits in pain, temperature and taste sensation • Autonomic dysfunction-blood pressure, salivation, swallowing, digestion, body temperature, lack of tears • Scoliosis (spinal curvature) • Frequent lung infections • Most with feeding tubes via stomach and fundoplication (wrapping of lower esophagus and upper stomach) • Limited or complete restriction of oral liquids and solids

18. Gastrostomy Tubes • We got loads of em!!!!

21. Spina Bifida • Birth defect involving incomplete closure of vertebral bodies (back bones) and spinal cord damage • Partial muscle paralysis and sensory deficits • Functional range from ambulatory to wheelchair dependence • Urinary and bowel care is critical • Frequent urinary infections

22. Seizure Disorder • Wide range of symptoms including uncontrollable shaking extremities, twitching, lip smacking, blinking, ”blanking out’, loss of consciousness and others • Many campers have seizure disorder as part of their primary medical issues • Most seizures are self-limiting, some require emergency medication

23. Nemaline Myopathy • Disorder of muscle function • Muscle weakness of varying severity • Some ambulate, most needs wheelchair assistance • Breathing difficulties with advanced disease • At-risk for lung infections

24. Muscular Dystrophy • Motor muscle disorder • Duchene’s variant most common • Progressive motor muscle paralysis • Late disease with breathing difficulties • Most require wheelchair assistance by adolescence • At-risk for lung infections and congestive heart failure

25. Cerebral Palsy • A non-progressive movement disorder • Most affected individuals have increased muscle tone (spasticity) • Varying degrees of severity • Articulation difficulty should not be confused with cognitive delay • Many affected are extremely bright

26. Question Module #1 In the event that a camper collapses, the first course of action should be • Call for help immediately • Leave your camper and look for help • Look through your camper profile to check on specific instructions • Start CPR Answer: 1

27. Question Module #2 If your camper insists that you ignore specific instructions for care, you should • Accept their directions without confirming • Call the camper’s parents to confirm the change • Discuss the discrepancy immediately with a medical staff member • Ignore the camper’s concerns without double checking Answer:3

28. Question Module #3 Signs of dehydration includes: 1)Headache 2)Dizziness 3)Color change 4)Rapid heart rate 5)All of the above Answer:5

29. Question Module #4 When assisting your camper in transferring from the wheelchair to a bed 1)Move the wheelchair as close to the bed as possible without locking the wheels 2)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 before transferring 4)Lock only the wheel immediately adjacent to the bed and then transfer Answer:3

30. Question Module #5 Campers with Familial Dysautonomia all require eye care with lubricating drops or ointment frequently throughout the day and overnight. This requirement is absolutely critical because 1)They tend to blink frequently 2)They do not make the normal volume of tears and this puts them at-risk for corneal abrasions 3)They get frequent eye infections 4)The eye drops improve their visual acuity Answer:2

31. Question Module #6 Wheelchair safety includes 1)Always locking wheels when transferring from the wheelchair to any position 2)Never running with the camper in the wheelchair 3)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 cause injury 5)All of the above Answer:5

32. Question Module #7 Signs of a seizure includes: 1)Uncontrollable shaking of the trunk or extremities 2)Facial twitching 3)Loss of consciousness 4)Staring or gazing without verbal response 5)All of the above Answer:5

33. Question Module #8 If your camper is fed or takes medications through a gastrostomy tube: 1)You should share extension tubing and a large administration syringe with other campers 2)Always carry your campers extension tubing and syringe with you everywhere you go 3)Use a new extension tubing for each feeding or medication administration 4)Ask your camper to bring the extension tube with them as needed Answer:2

34. Question Module #9 If your camper had FD or a known seizure disorder, you should do the following when they use the bathroom: 1)Have the camper lock the bathroom door and ask them to call you if they are having difficulty 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 privacy throughout 3)Allow your camper to lock the door without specific instructions 4)Never knock on the door to check up on your camper Answer:2

35. Question module #10 In the event that a bystander asks you specifically what your camper’s diagnosis is: 1)You should ignore the question with no response 2)You should politely explain that confidentiality rules preclude discussing specifics of the camper’s diagnosis 3)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 Answer:2