Family to Family

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A periodic newsletter from your clinic's Cystic Fibrosis Family Advisory Council

Who We Are

We formed our Cystic Fibrosis Family Advisory Council in September of 2008 in accordance with guidelines of the CF Foundation and Nemours to promote family centered care. We are fortunate to have a terrific CF Care Team with whom we work to improve all aspects of our children's care. A few examples of how we have partnered with Team to do that are: streamlining PICC line admissions and procedures; having bloodwork done in clinic to save time and travel and promote infection control; inpatient satisfaction; participated in the design and construction of and publicity surrounding the Expansion; served on many hospital committees relating to infection control, outpatient lab, palliative care, website design, new unit for short term stay patients, hiring of certain Nemours personnel, PFT lab, physical therapy and more.


We are always looking for ways to improve the quality of care and quality of life of our children with CF and our families. We always welcome ideas from both patients and families. Please contact us or Kathi Peeke with any ideas you would like us to pursue.


Find us on Facebook at https://www.facebook.com/groups/CFFAC/

Comfort Measures

Did you know that Nemours A.I. duPont Hospital has many Comfort Measures available to relieve pain and anxiety for your children? They have been expanding these measures and publicizing their availability lately. However, since we all try to limit our visits to the hospital, you may have missed the notices. Here are some of the options available to your children:



Healing Touch is an energy therapy designed to help the body move towards its highest ability to heal. Through the use of light touch or above the body touch, Healing Touch Practitioners work with the patient's needs to center and balance the energy layers (electromagnetic field) and centers of the body. Healing Touch is a complimentary service that works in conjunction with traditional Western medicine practices. To learn more about this holistic therapy and how it can help with pain control, please contact the Healing Touch Program Coordinator, Walle Adams-Gerdts, BA, RN, HTCP/I, CHt at ext 4325 (HEAL) and see the article below. This service is available for in-patients as well.

Child Life Specialists are experts in child development, who promote effective coping and distraction through play, preparation, education, and self-expression activities. They may be present with your child during certain medical procedures or when parents can not be present. You can ask for a Child Life Specialist to visit your child on a out-patient appointment or in-patient, in a room or for a procedure. Child Life also offers child care services for the siblings of your child with CF so that they can be safe and happily occupied during your outpatient visits.

Sucrose Pacifiers are coated with a sucrose (sugar) solution. Infants from birth to 6 months undergoing minor painful procedures may benefit from small amounts of oral sucrose placed in the infant's mouth via pacifier 2 minutes before the procedure. The analgesic effects last 5-8 minutes.

Buzzy Bee is a child friendly device that helps block pain signals around the sites of injections or IV starts using vibration, cold and distraction. Buzzy is placed on or around the injection site for 15 seconds before the procedure and then moved above the site remaining in place during the procedure.

Medications may be used to help prevent or treat your child’s pain. There are many types of pain medicines we can use. Which type is best for your child will depend on many things, including the type of pain, how long it will last, and the reason your child has pain.

  • Anesthetics, such as EMLA®, LMX-4® or Jet injection (J-Tip®) can be put on the skin of children to numb it. It is often used before a needle or an IV is inserted under the skin. It does not always prevent all discomfort, but helps to reduce pain for many children.

  • Non-steroidal anti-inflammatory drugs (NSAIDs) reduce pain and inflammation. They help manage mild to moderate pain. To reduce stomachache, they should be taken with food or formula when possible. These medications should be used with caution if the patient has a risk of bleeding. Ibuprofen (Pediaprofen®, Motrin®, Advil®) and Toradol® are some examples.

  • Nitrous oxide (laughing gas) is a sedative medication that your child breathes during procedures to help prevent discomfort associated with procedures such as lumbar puncture or catheterization.

  • Opioid analgesics are strong medicines used to treat pain during or after procedures or for severe injuries. They may be given orally or through the IV. Opioids can have side effects of itching, nausea or vomiting and children often become sleepy after receiving these medications.

This list is not specific to your child but provides general information. If you have any questions or concerns, please talk with the doctor or nurse caring for your child.


Massage therapy is also available free during inpatient stays and for a small fee during outpatient visits. See http://www.nemours.org/service/support/naidhcsupport/massagetherapysupport.html.

Our hospital also has departments designed to help deal with chronic pain and to address issues that arise when dealing with a chronic disease outside of the excellent medical care provided. Check out the new Integrative Medicine Department (http://www.nemours.org/service/medical/integrativemedicine.html?tab=location) in Wilmington and the Palliative Care Department (http://www.nemours.org/service/medical/palliative-care.html) to learn more.

Physical Therapy

Hopefully your family has met Betsy Mullan, PT, PCS, at a clinic visit or an in-patient visit. Betsy has worked with our CF families for a number of years and is very familiar with the many ways that CF affects the body (e.g., coughing causing sore muscles or urinary incontinence, the importance of strong core muscles, etc.) and the vital need for those with CF to exercise. As you know, infection control policies requiring patients to stay in their rooms, lovely as the new rooms are, make exercise challenging as do feeling tired, out of breath, anxious and sad as many kids do during an admission. Betsy and the nursing staff on 4 East and the CF Team have been working to bring more exercise equipment to the floor to help kids move as much as they can. Betsy is currently evaluating treadmills. She will also be storing free weights, cuff weights, Theraband, scooter boards, small physio balls and paper copies of exercise programs to distribute on the unit.


If you believe that your child would benefit from a complete physical therapy evaluation or a home exercise program, contact Betsy Mullan at Betsy.Mullan@nemours.org.

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Healing Touch

Nemours offers many services to patients and families intended to supplement a patient’s medical care and make her visit or stay more comfortable. Unfortunately, our kids with CF can’t take advantage of some of these services due to the infection control guidelines. One from which they can benefit, however, is called Healing Touch, a form of integrative medicine known as Relaxing Energy Therapy.


You can learn about the Healing Touch Program, in which Nemours’ practitioners are certified, at http://healingtouchprogram.com and about our hospital’s program at http://www.nemours.org/service/support/naidhcsupport/integrative.html. While each session is uniquely tailored to the patient and how s/he feels at that moment, the goal of the therapy is to encourage and support the body’s natural ability to heal, supplementing the patient’s traditional health care. The therapist uses light touch or above the body touch to achieve these goals.


The benefits of Healing Touch Therapy can include the following: stress reduction; calming of anxiety, depression; decrease of pain; strengthening the immune system; enhancing recovery from surgery; helping to decrease neck and back discomfort; stimulating the relaxation response for better healing opportunities; creating and strengthening a sense of well-being; easing acute and chronic conditions; helping alleviate digestive discomfort.


Sessions can occur in the Healing Touch room located near the Family Resource Center, a spa-like room with a massage table and very relaxing atmosphere, or in the patient’s room if the patient prefers. Either way, infection protocol is followed, and the family has the option of being present or allowing the patient privacy for the session.

I had the benefit of meeting with Ms. Wally Adams- Gertz, a registered nurse who has worked in the hospital’s oncology and other units and who runs the AIDHC program. I recommend that you contact Wally for further information or to schedule a session during your next in-patient stay. It is holistic and supplemental to your child’s medical team’s plan; it does not involve any medication and can be a lovely respite from the lights, sounds, smells and feel of your child’s usual medical treatment. It is free and available to both patients and caregivers.

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Save the Date -- CF Education Day

CF Education Day will take place on Saturday, January 11, 2016 at Christiana Care Hospital in Newark, Delaware. Along with our outstanding staff speakers, our guest speaker will be Julia Rae, Miss Philadelphia 2015, Fox29 Junior Reporter, Singer and Model. She is a multi-talented and inspiring woman living a busy life with a positive attitude while coping with cystic fibrosis. Look for her at https://www.facebook.com/juliaraemusic/info/?tab=page_info.
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Contact Us

You can reach us in any of several ways. Email us directly at . Message us on Facebook to join our Facebook group at https://www.facebook.com/groups/CFFAC/ (Nemours duPont Cystic Fibrosis Family Advisory Council). Kathi Peeke or Michelle Reed can connect you. Meet us at one of our Lunch and Learn events or at a Great Strides walk.

Meeting Schedule

Our group meets almost every month, alternating meetings in the hospital with meetings at Panera in Fairfax. If you are interested in attending a meeting, please contact Bethann Deveney at pencf@aol.com. We'd love to meet you.
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