Experienced Insights into Caring for a Child with Pulmonary Hypertension

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1 Experienced Insights into Caring for a Child with Pulmonary Hypertension March 18, 2015 Presented by the Nora Thelma Boström Foundation in partnership with the Pulmonary Hypertension Association

2 Introduction Purpose Share practical tips and tricks for managing the daily life of an infant or toddler who has pulmonary hypertension Harness knowledge from experienced parents Create a repository of information for parents of newly diagnosed infants or toddlers

3 Presenters Introduction Claire McCormack and Thomas Boström Claire and Thomas s daughter Nora had PH

4 Introduction Claire and Thomas have experience with: PH from birth until four years old Continuous oxygen Oral medications IV and subcutaneous Remodulin

5 Introduction Created the Nora Thelma Boström Foundation in honor of their daughter Mission is to provide resources and support to caregivers of chronically ill children

6 Introduction Anne Davis is a registered nurse at Seattle Children s Hospital. Works with Dr. Delphine Yung Pulmonary hypertension nurse coordinator

7 Introduction Contributors Michelle and David Peek and Jayna Wall provided valuable input Michelle and David s daughter Sarah used Flolan Jayna s son Jackson uses subcutaneous Remodulin

8 Introduction Agenda Administering Oral Medication Central Line Management Subcutaneous Site Management Social Issues Communicating with Health Care Team

9 Organization Administering Oral Medication White board listing all medications, doses and check boxes for each time meds are due Check off the box when each medication is given Erase and start fresh each day

10 Administering Oral Medication

11 Administering Oral Medication Dedicated spot in cabinet and/or refrigerator for meds, syringes and other tools Write the brand name in marker on generic bottles to avoid confusion e.g., Write Lasix on the generic furosemide bottle

12 Administering Oral Liquid Medications Infants Medication Place syringe in their cheek and press the plunger slowly For young infants with tongue thrust reflex, squeeze cheeks while dropping medicine in cheek to keep lips pursed Many medications can be masked in a small bottle of breastmilk or formula

13 Toddlers Administering Oral Medication Place syringe in their cheek and press the plunger slowly Older toddlers may want to help you hold the syringe and press the plunger Start with the good tasting medications, put the bad tasting ones in the middle and finish with a good tasting med

14 Pills Administering Oral Baby Aspirin Medication Pill cutter usually works for cutting in half Infants may need aspirin dissolved in a bottle Once infants have teeth they may be able to chew Toddlers may prefer aspirin crushed and dissolved in pureed food or yogurt

15 Administering Oral Bosentan/Tracleer Medication If prescription is for a third or a fourth of a pill, a pill cutter may not work. Use a sharp paring knife Does not dissolve well in breastmilk or formula For very young infants, put a little warm water in the bottom of a bottle and dissolve the pill. Add breastmilk or formula

16 Administering Oral Medication For older children, make a pool in a container of yogurt. Add some warm water and dissolve the pill Easy to feed in one or two spoonfulls Disguise the whole pill in chocolate pudding and serve in one spoonfull

17 Administering Oral Medication Helping Toddlers Comply Save a favorite sticker, toy or juice as a treat for finishing meds Let your child watch a short DVD or play a game on the ipad while taking medications Set a timer. If your child finishes all meds by the time the timer rings, she can pick a prize

18 Central Line Management Explaining placement of central line Create a social story Use pictures of your child, the line, the dressing, the pump and the backpack Tell a story about not pulling on the line, keeping the dressing in tact, pump and dressing changes and how to cope

19 Central Line Management Keep social story accessible to your child

20 Central Line Management Add a central line and a backpack to your child s favorite stuffed animal or doll Look for books or cartoons that have characters who wear backpacks Elly the Elephant in Pocoyo Dora the Explorer

21 Central Line Management Reducing Anxiety Create a daily or weekly schedule Use pictures to show the days when you will do dressing or pump changes Also works for doctor s visits and blood draws

22 Central Line Management Dressing Changes Find a comfortable spot for your child to lay down and where supplies are in easy reach Have an adult who your child trusts lay down and hold your child s hands Set up a favorite DVD that is long enough to last the whole dressing change

23 Central Line Management Do the dressing change after a bath so your child is relaxed Plan a fun activity for your child to look forward to afterwards

24 Central Line Management Challenges Sensitive skin Talk to your child s doctor Sterile topical agents may help to soothe skin under the dressing E.g., Combination of half sterile Mupirocin Calcium Cream 2% and half sterile Triamcinolone Acetonide Cream.025% applied with a sterile q-tip under the dressing Rinsing with sterile normal saline

25 Central Line Management Itchiness Talk to your child s doctor about a daily antihistamine E.g., Benadryl or Hydroxyzine (Atarax) Buzzy is a palm-sized device that uses vibration to reduce pain associated with shots and blood draws ( Can also be good for reducing itchiness without further irritating the skin or compromising the dressing

26 Central Line Management Securing the line Create a tab around the line using tape Tape the tab to your child s skin Pin the tab to your child s shirt Cut a hole in your child s undershirt Thread the line through the hole in the shirt and into the backpack None of the line is outside the shirt or backpack Works best with daily line changes for Flolan

27 Central Line Management CareALine fabric wraps keep the line off your child s skin ( Works best for daily line changes with Flolan Ace Bandage or Nexcare Coban wrapped loosely around the incision site can keep sticky fingers from touching the dressing directly

28 Central Line Management Dressing Supplies What works for one person may not work for another Consult specialty pharmacy for alternate dressings and cleansers Keep trying until you find what works

29 Central Line Management Dressing Supplies Test dressings and cleansers on other areas first to check for sensitivities May never find products that eliminate all irritation Infection prevention is paramount

30 Central Line Management Establish a dedicated place to store dressing supplies Make a list of all supplies and track how many you have Re-order when supplies are low

31 Central Line Management Adhesive Remover Spray may be more effective than pads in removing the dressing E.g., Coloplast

32 Central Line Management Types of Dressings Mepilex Hypafix Tape (BSN Medical) around edges IV 3000 Telfa Non-Adherent Pads Silverlon Lifesaver Ag Antimicrobial BioPatch Tegaderm

33 Central Line Management Flolan Cooler that can plug into wall outlet or car adapter to keep meds and ice packs cool on car trips Patterned cooler bag to hook on the frame of your child s bed at night to keep meds and ice packs cold over night

34 Subcutaneous Management Challenges Hard to know when site is failing External signs of failure Itching, hurting, bleeding, leaking discharge Site may fail slowly Site may not exhibit external signs of failure

35 Subcutaneous Management Young children may not be able to communicate that they are feeling a little worse due to site failure Talk to your child s doctor about changing the site on a set schedule to avoid site failure that is not apparent E.g., every two weeks

36 Subcutaneous Management Placing the Site Hard to find a fatty area in thin PH patients Back of the arm seems to be most popular If a site does not last long, consider placing another site on the same arm to give the other arm more time to heal

37 Subcutaneous Management Securing the Line May not need adhesive if a wrap works E.g., gauze directly over the site then wrapped with Ace bandage or Coban Child may scratch the site out in their sleep No-no s or other arm brace to limit arm movement When securing the line to the child s body or shirt, make sure she has enough slack

38 Subcutaneous Management Storing the Pump More options because the pump is smaller Sew a pocket on an infant s onesie or on a toddler s clothing Use the animal harness backpacks Older children may be able to use the clip on the pump Poppy Pockets work for some (

39 Subcutaneous Management Placing the Site Nurses usually recommend placing numbing cream on the new site minutes before Children may learn that cream means an ouchie is coming and become upset Use Buzzy instead

40 Subcutaneous Management Site Pain Management Talk to your child s doctor Tylenol and Benadryl before and every 4-6 hours around the clock for the first few days PLO gel Triamcinalone cream Nasacort spray Arnicare homeopathic gel Benadryl cream

41 Social Issues Avoiding Illnesses Educate friends and family about the risks of minor illnesses Place hand sanitizer by the door Place a sign by the door Please help keep Jackson safe by washing your hands and using hand sanitizer when you arrive and throughout your visit

42 Social Issues Place a Stop sign on the stroller or car seat Please wash your hands before touching mine Practice exceptional hand washing yourself Choose outdoor activities to avoid crowded indoor areas

43 Social Issues Wipe down infant swings, picnic tables, high chairs, grocery carts, etc. with sanitizing wipes Periodically stop your child and clean their hands when they are out in public

44 Social Issues Teach your child to sing Happy Birthday twice to ensure they are adequately washing their hands Celebrate your child s half-birthday in the summer to avoid birthday parties during flu season

45 Social Issues Oxygen Purchase a pulse oximeter at REI or online so you can check saturations on the go When using portable tanks, set a timer to remind you to change the tank

46 Social Issues If it provides enough oxygen support, connect two 25 foot oxygen tubes to give your child more freedom Extension tubing may affect the flow of oxygen so check carefully Oxygen flow gauges on home equipment may be inexact so watch your child s symptoms

47 Social Issues Communicating With Your Child Children know how they feel even if they are too young to communicate that to you After a PH episode, make a note of your child s behavior immediately before so you can spot it earlier next time

48 Social Issues Communicating With Your Child Start early teaching signs or words to help your child explain how she feels E.g., rub tummy for nauseous, or heart hurts for chest pain

49 Social Issues Keeping Up With Other Kids Teach your child to play a little, rest a little Plan an alternative fun activity for the rest period E.g., crafts, matchbox cars on a table Talk to the parents of your child s friends and see if they will have their child take a rest too

50 Social Issues Baths Schedule baths on dressing change days Talk to your child s doctor about disconnecting from the pump One parent does the bath The other parent prepares the new pump

51 Social Issues If you don t disconnect, keep the pump dry with a shower pack outside the tub Subcutaneous site Protect it with gauze and Tegaderm over the middle of the site Wrap the whole arm with overlapping pieces of Glad Press n Seal Tape with waterproof Hy-Tape

52 Social Issues Central Line Protect with gauze over the dressing Place a slightly larger piece of Glad Press n Seal Then add an even larger piece of Glad Press n Seal Seal with paper tape or waterproof Hy-Tape

53 Social Issues Removing the extra dressing can be difficult and time consuming Consider giving a reward at the end Keep line connections dry Wrap connections in Glad Press n Seal Separate bath/swimming from line changes as extra precaution

54 Social Issues Swimming Dry suits can allow children with subcutaneous site or central lines to swim Place oxygen on the side of the pool and use a short extension tube

55 Social Issues Blood Draws Prepare your child with social stories E.g., Create your own or look for books about medical procedures like Franklin Goes to the Hospital Include on the weekly or daily schedule Provide a special treat afterwards

56 Social Issues Blood Draws Use Buzzy to reduce pain Use a cold spray to numb the skin just before Find a talented phlebotomist and learn her schedule Make sure doctors are coordinating blood tests to reduce total number of draws

57 Communicating with Medical Team Record new or unusual symptoms on a calendar Spot patterns Provide dates, times and frequency of symptoms to medical team Take pictures and videos to display symptoms that occur at home

58 Communicating with Medical Team Request an address for non-urgent issues Send s on your schedule nights, weekends, etc. Request a cell phone number for emergencies

59 Communicating with Medical Team Create a relationship with a primary person Your child will be more comfortable with them They will become familiar with your child s developmental changes They will better understand subtle changes

60 Communicating with Medical Team If your child is hospitalized Use signs to educate hospital staff on how to interact with your child Push for cluster care to reduce interruptions Have staff ask for permission before touching your child

61 Communicating with Medical Team Push for baths, blood draws and dressing changes to be done when your child is awake and calm Find ways to give your child a sense of control E.g., child chooses whether to take blood pressure or temperature first

62 Communicating with Medical Team Get to know the child life specialist Try to have a family member or friend present at all times

63 Communicating with Medical Team No one knows your child as well as you do Don t be afraid to be persistent Don t hesitate to ask for second or third opinions, remotely if necessary As your child grows and changes, so will the techniques you use

64 Conclusion Find support with other parents through PHA or the Facebook page

65 Conclusion Question and Answer (20 min)