society of pediatric cardiovascular nurses · in one week we have had a 1.8 kg preemie in the cath...

1 Society of Pediatric Cardiovascular Nurses Newsletter, Fall 2011 Society of Pediatric Cardiovascular Nurses Newsletter, Spring 2011

Society of Pediatric Cardiovascular Nurses www.spcnonline.com

VOLUME XXV, NUMBER 2 Fall 2011

Board of Directors

Mary Rummell - President Jo Ann Nieves - Vice President

Nancy M. Hagberg - Treasurer Kas Sheehan – Secretary

Susan Turpin - Member at Large Kathy Hinoki – Past President

Karen Uzark - Founding Member Nancy Koster & Julie Creaden - Newsletter Editors

Celia Buckley - Web Site Coordinator (mailto:[email protected])

Presidents Message 2011

A Message from the President: Mary Rummell MN, RN, CNS, CPNP

As I sit to write this letter to you, I cannot help but reflect on the changes that have happened over my many years in caring for patients with congenital heart disease (CHD). In one week we have had a 1.8 kg preemie in the cath lab to open an atretic pulmonary valve and another with tetralogy of Fallot who had finally reached 2.3 kg, in the operating room for complete repair. I also received a wedding invitation from an adult patient who had a Mustard repair of transposition of the great arteries and high school graduation invitation from a patient who had a Fontan operation. Sharing the success stories of such positive change helps both the practitioners caring for and families of these tiny babies through the difficult early days. Change has also taken place in SPCN. It is time to update you on what has happened over the past year in SPCN and to plan for the next. Thanks to Jo Ann Nieves, Vice President, plans are well under way for our Membership Meeting and Educational Program on Saturday, November 12 in Arnold Palmer Children’s Hospital, Orlando, Florida. Complete information on this event is included in this newsletter. We hope many of you will join us. Please let us know if you plan to attend both the meeting/program and the dinner. We will gather for dinner after the meeting at BUCCA DI BEPPO in Orlando. (details on pg 8)

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mailto:[email protected]


Over the past year we have increased our use of email to communicate with you. We know that you read these electronic communications by the wonderful response we received to the special offer by Scientific Software Solutions (SSS) to send a copy of their 2nd edition of Illustrated Field Guide to Congenital Heart Disease and Repair to SPCN members free of charge. This offer came as SSS needed to make their warehouse available for the 3rd edition of this great resource. This is the second newsletter that will be delivered to most members electronically. To date, we have not received any negative feedback about the electronic newsletter. For those of you that continue to receive the newsletter from the US Postal Service (snail mail) and would like to change to the electronic format, please let our Secretary, Kas Sheehan, know. ([email protected]) We now have the ability for you to pay dues and to use our communication resources electronically. Instructions on the use of our Pay Pal account are on the website. Let your colleagues know about SPCN. Membership in SPCN not only provides information about CHD, but is a great (and inexpensive) way to support your hospital on the Magnet Journey. Please be timely in sending in your dues so that our Directory will reflect all current members. The Directory will also be sent electronically to those who have requested it and by ‘snail mail’ to those who choose that option. Our Web Site: www.spcnonline.com continues to provide information and links for job opportunities and conferences on CHD. A link to the Care Resources for Adults with CHD is on the Home Page. SPCN experts in Adult Congenital Heart Society (ACHD) have developed these resources. Several new documents will be posted on the site by the time you receive this newsletter. To reach out to the direct caregiver who works only with adult patients, links to this site will be included on web sites for the ACHD, the AHA Council on Nursing, and the AACN. Information related to this work will also be included in the newsletters of some of these organizations. As we are winding up the work on the ACHD Care Resources, we will start on resources for infants/children. This work is in collaboration with the Pediatric Cardiac Intensive Care Society. Many of you responded to a survey on what you would like to see developed in these resources. Others have responded to help to develop them. We appreciate all of these responses. We are working on analyzing the content of the survey and the development of the team. The next project will be to address resources for the micro-preemie. With all of these electronic changes, we are looking to update our web site. We have investigated several leads for a new web site manager, but have not been successful. If any of you design or know someone who designs and manages web sites, please let our SPCN Web Site Coordinator, Celia Buckley, know.([email protected]) The last update is on the election of officers for SPCN. As you know, each office is for two years with two offices open on alternate years. This year the offices of Vice President and Treasurer are up for election. Both current officers have agreed to run again. The ballot is included with this newsletter. You may vote by sending an email or a paper ballot to Kathy Hinoki, SPCN Past President, by October 28, 2011. You may also indicate if you are interested in one of these offices, or any other SPCN position. I would love to have members interested in any office/position add their name to the ballot or contact me. Each position has many tasks and all of the officers would appreciate the assistance of a member interested is helping as well as learning more about the operation of SPCN. Finally, I welcome any communication from each and every one of you. Send your thoughts, suggestion, or questions to me. Hope to see you in Orlando!


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Due to much variability in the practice at my hospital, I surveyed the SPCN membership to look for Best Practices in the

care of our immediate post operative patients. I received replies from 18 centers, including one in New Zealand, to my

questions about the care of the patient who (1) returns from the OR with an open chest and (2) the use of diuretics and

peritoneal dialysis in the immediate post operative period. Here are the summaries to my questions.

Open Chest Care:

Primary wound closure is completed by patch material of Gore-tex/Silastic/Esmarch material in 60% of the centers. One

center approximates the edges of the skin, but leaves the sternum open. The primary patch is then covered by

Tegaderm/coban in these 11 centers. Five additional centers use only the Tegaderm/coban to cover the wound. Two

centers have a custom dressing: one with a stented Dacron or Duoderm dressing and the other with a combination of

gauze and other dressing materials. Only 2 centers clean the suture line around the patch: one with betadine daily and

the other with chlorhexidine. Six centers have specific policies/procedures for the care of patients with open chests.

These centers are willing to share these policies/procedures.

Diuretics/Peritoneal Drainage Catheters/Dialysis:

Without exception all 18 centers use furosemide as their first diuretic. Variability comes with the initial dose which may

be immediately in one center, within 6-8 hours in 2, within the 1st postoperative day in 8, and after 24 hours in two

centers. A continuous infusion of furosemide is used in 14 centers, especially on unstable patients and complex

neonates. Twelve centers routinely place peritoneal dialysis catheters as a drainage catheter. These catheters are used

for dialysis only with acute renal failure.

These responses led to the development of procedures to care for the patient with an open chest and with a peritoneal

dialysis catheter, providing consistency for the direct care nurse.

Society of Pediatric Cardiovascular Nurses Ballot

Fall 2011 Vice President _________ Jo Ann Nieves, RN, MSN, CPN, ARNP, PNP-BC is currently a cardiology PNP at Miami Children’s

Hospital, in Miami, Florida. She has presented on pediatric CV nursing topics nationally and internationally, and is published in peer reviewed journals. Jo Ann has been actively involved in planning various national and international CV nursing meetings, including being the nursing program committee chairperson at the World Congress of Pediatric Cardiology and CV Surgery in Buenos Aires, Argentina in 2005. This coming year, she will be a member of the Pediatric

FOLLOW UP ON SPCN SURVEYS

Mary Rummell, MN, RN, CNs, CPNP


Cardiovascular Nursing Subcommittee of the American Heart Association and also recently became an AHA Fellow (Cardiovascular Disease in the Young). Jo Ann has been a member of SPCN since 1988, and previously served on the SPCN board of directors as secretary and as treasurer. She is currently running for a second term as vice-president.

Treasurer _________ Nancy Hagberg, RN, MS, FNP is currently the clinical staff director of outpatient pediatric cardiology at Child Heart Associates in Worcester, Massachusetts. Her responsibilities include

managing the care of both children and young adults with complex CHD, and directing their pediatric preventive cardiology clinic. Nancy has been a member of the Central Massachusetts Regional AHA Board of Directors for over 20 years, received the AHA Clinical Excellence in Cardiovascular Nursing Award in 1996, and is also a Fellow of the AHA Council on Cardiovascular Nursing. She has been a member of SPCN since 1995. Nancy is currently running for a second term as treasurer.

You may either email or mail your ballot (to Kathy Hinoki - Past President, SPCN), but the ballot must be received by Friday, October 28, 2011 in order to be counted. For email purposes, send to: [email protected].

For mailing purposes, send to:

Kathy Hinoki 15061 E. Midcrest Drive

Whittier, California 90604-2107

Congratulations Pat! Pat O’Brien has been selected to receive the 2011 AHA Cardiovascular Nursing Excellence in Clinical Practice Award. Pat’s clinical expertise and leadership has made a huge impact on the field of pediatric cardiovascular nursing and we are so fortunate to have her as a member and past president of SPCN. If you are going to the AHA meeting, please help Pat celebrate by attending the CV Nursing Council awards dinner and business meeting in Orlando on Tuesday, November 15!



Summary for SPCN Newsletter

Presenter Disclosure Information American Heart Association: Chicago, IL; November 17, 2010 Michelle M. Steltzer, CPNP-AC Cardiovascular Program: Children’s Hospital Boston Discharge Preparation and Parent Education for Infants with Single Ventricle Physiology Key “Nuts and Bolts” for Discharge: Physiologic stability of infant Completion of pre-discharge screening:

o Newborn Screen and/or other genetic tests o Hearing Screen o Immunizations (and Synagis) o Supine positioning and all babies cry o Assess social support needs o Car seat test

Parental readiness and education: o Individualized teaching plan (feeding, medications-drawing up and giving, treatments, CPR) o Repeat demonstration with education o “Rooming in” encouraged for parents or primary care providers assuming care in the home

Home care needs arranged (Pox, scale, VNA, EI, additional feeding equipment if needed,) Review of history and medical course Communication with PMD and f/u appointments arranged and plan for outstanding issues at discharge Plan for growth and development

With more and more prenatal diagnosis, the continuum for the infant with single ventricle physiology extends

to include prenatal, birth, first meeting in CICU/NICU, in CICU following surgery, and transfer to the floor.

Transfer is often the practical application of discharge discussions and when the idea of home becomes more

tangible for patients and families. Ideally, transfer from the CICU to the floor should not be the first time

families hear about home surveillance monitoring.

Many variables are involved in final discharge home plans. The infant’s clinical state, medical, and other

support needed play a role. Many families face social concerns as well: first time parent, teen parent, single

family, additional young children, limited financial and social support, homeless, language issues, and culture

differences. The idea of discharge is often frightening and isolating to families. The risk for pile-up of

multiple stressors on families is identified by McCubbin and should not be underappreciated.

Listening to the needs, requests, and discussions with patients and families is invaluable to providing quality

care across the continuum. In a decade of years past and going forward, I greatly appreciate all family

feedback. This has certainly made the home surveillance program stronger for families today and will be for

the future within our local care centers and throughout the world. Stemming from this theme, a family-

designed discharge process was shared in learning session two in Cincinnati, OH during a JCCHD collaborative

meeting http://www.jcchdqi.org/. Parents reported: 59% wanted to begin discharge planning on admission,

68% wanted medical training needed for home done as soon as the need is identified, 62% wanted

http://www.jcchdqi.org/


appointments, therapies, etc scheduled for them at discharge, and 63% wanted prescriptions in hand at

discharge.

Basic tips to facilitate assessment of parental readiness and education include: honest unbiased information

sharing, flexibility: informal and formal teaching, realistic expectation of the “best fit” for them, identifying

and capturing the “teachable moment”, promotion of “Rooming-in” for parents and care providers to become

more independent in cares with the support of nursing staff 24/7, providing written information, holding

families accountable for their agreement in plan of care, and allowing for repeated demonstration of cares.

Essential in the parent education includes “The Talk” which includes anticipatory guidance around what is the

home monitoring program (HMP) or home surveillance program? Why do we do it? How to? How Long?

What is the nurse practitioner lead weekly follow-up call? What to expect for inter-stage concerns? Parent log

binders are helpful in tracking the daily data about feedings, weights, saturations, heart rates, and other

questions or concerns. Red flags or breaches undoubtedly will occur and must be clearly communicated

within your program with families and providers at discharge and all subsequent follow-up clinic and

admissions until stage 2 palliation.

The Children’s Hospital Boston red flags or breaches are identified as:

Strong nursing advocacy includes never assume anything throughout the teaching and engagement process:

always ask those tough questions in addition to being available to hear and understand the answers;

continuously assess the patient, family, resources, and family coping ability; clearly articulating discharge

milestones; starting teaching early; and finally reviewing and updating care daily.

Engagement of all participants in the Medical Home is essential. These providers include: patient and family,

attending physicians (surgeon, cardiologist, referring cardiologist), primary care provider, nurse practitioners

inpatient and outpatient, nursing team inpatient and outpatient VNA, case management, equipment

providers, early intervention, social support, pharmacy, administrative assistance, and local ER and 911


emergency services. Several supportive documents and tools were identified that can be used to help

facilitate communication and encouraging transfer of non-fragmented and coordinated care.

Regarding medications, proper prior planning-a MUST! Prior authorizations (generic vs. brand) need to be

assessed. Compounding pharmacies need to be identified that are feasible for families when discharged. In

addition, assuring availability of families to secure the medications requires many factors: medical card,

insurance co-pay, and full pay outright for some out of state or international for future reimbursement. Some

states will not fill prescriptions from the primary surgical site if out of state. Finding a liaison locally with PCP

or referring cardiologist office adds one more layer of discharge preparation.

Ultimately, obtaining prescriptions and equipment in hand for discharge is ideal for use with discharge

teaching. Practice drawing up and giving medications prior to discharge is essential for all families.

Medication information, calendars, and other discharge tools should be utilized as needed. Practice with the

home pulse oximeter and scale is essential before discharge to aid in family’s understanding of the equipment,

essentials of how they will be able to do the cares in the home, and facilitate the learning process.

The team must dialogue with families around discharge plan regularly (at least daily), schedule teaching early

and reinforce often, encourage family transition to primary care-giving role with health care team support

available and the ultimate outcome goal is: encouraging confident and potentially more resilient parents and

families caring for their fragile infant.

Lastly, sharing is caring. A dear nurse colleague and friend shared this thoughtful thank you card during a visit

a few years back. This kind thank you gesture was in response to sharing ideas, experiences, and tools to

enable her home country to set up the foundations for a home surveillance monitoring program. I hope this

Dr. Seuss colloquialism will inspire you and it has me on many a challenging day caring for these tenuous and

fragile patients.

References: available on request.


SPCN Annual Educational Program and Business Meeting Saturday - November 12, 2011

Arnold Palmer Children's Hospital 92 West Miller Street

Orlando, Florida 32806 407-649-9111

SITE: Winnie Palmer Building, Classroom 1 & 2 2:00 - 2:30 Registration and Refreshments

2:30 - 4:30 Educational Program - Single Ventricle Care: Advances in Management with Work from the National Collaborative

4:30 - 5:30 Business Meeting 6:30 pm SPCN Dinner BUCCA DI BEPPO, Orlando – Florida Mall between Nordstroms and Macy’s Directions: to Arnold Palmer Children's Hospital: Route 408, exit Rosalind Off Interstate 4 West - exit 82B, Gore Street Off Interstate 4 East - exit 81BC, Kaley Street Hospital website: http://www.orlandoregional.org/arnoldpalmerhospital/index.aspx SPCN contacts: While in Orlando: Kas Sheehan cell # 727-235-3095 Jo Ann Nieves cell # 954-647-4487 Mary Rummell cell # 503-260-1761 Make sure you RSVP and specify if you will be attending the educational program, dinner, or BOTH events so that space, materials, and food will be reserved for you. RSVP’s should be directed to Jo Ann Nieves at [email protected] or call 786-624-4344 by November 1.

We look forward to seeing you there! Thank you to Cheryl Leo RN, CCRN, ANM & the Arnold Palmer Cardiac Program for their assistance in planning the meeting.


AHA Sessions 2011 – Orlando, FL

Sun. Nov. 13th – Wed. Nov.16th

Sunday, Nov. 13 - 5:30 PM – 6:45 PM Room W110a CV Seminar

Measurement of Functional Outcomes of Children Following Open Heart Surgery

Moderator: Jane Newburger, Boston, MA

Meaningful Methods of Neurodevelopmental Assessment: What and When

Cathrine Limperopoulos, Washington, MA

Meaningful Measures of Physical Function for Children

Brian McCrindle, Toronto, ON, Canada

Incorporating Quality-of-Life Measures into Patient Care

Bradley Marino, Cincinnati, OH

What Should a Long-Term Follow-up Program Look Like?

Kathleen Mussatto, Milwaukee, WI

Monday, Nov. 14 - 7:30 AM - 8:45 AM Room W110b How To Session

How to Apply Quality-Improvement Methodology to Enhance the Care of Children with Congenital Heart

Disease

Moderator: Mary Rummell, Portland, OR

Development of Quality Metrics

Jean Anne Connor, Boston, MA

A Multidisciplinary Collaborative Approach: JCCHD

Gerard R Martin, Washington, DC

The Nurse’s Role in Quality-Improvement Efforts


Monday, Nov. 14 – 9:00 AM – 11:55 AM Room W300ef Oral Abstracts

Impaired Cognition and Mental Health of Patients and Families

Moderators: Karen Uzark, Ann Arbor, MI and Mary Woo, Los Angeles, CA

Tuesday, Nov. 15 – 12:00 PM – 2:00 PM Room TBA (Likely at the Rosen Centre)

Pediatric Nursing Research Networking Luncheon: Quality Improvement Science

Panelists: Jean Anne Connor, Kathleen Mussatto, and Angela Green

(Please come with topics or questions related to QI that you would like to discuss. Lunch will be provided courtesy of

AHA CVN Council.)

Tuesday, Nov. 15 – 5:30 PM – 6:45 PM Room W209c CV Seminar

Heart Failure in Infants and Children: A Multidisciplinary Approach

Moderator: Elizabeth Blume, Boston, MA

Assessment and Risk Stratification

Robert D Ross, Detroit, MI

Outpatient Management

Esther Liu, Palo Alto, CA

Cardiac Resynchronization Therapy

Patrick Frias, Atlanta, GA

Psychosocial Aspects of Chronic Heart Failure in Children

Constance E Cephus, Houston, TX

Wednesday, Nov. 16 – 7:30 AM – 8:45 AM Room W110a How To Session

How to Optimize Quality of Life for Children with Heart Disease and Their Families

Moderator: Elizabeth Tong, Boston, MA

Quality of Life in Children with Congenital Heart Disease

Karen Uzark, Ann Arbor, MI

Quality of Life of Parents/Families

Kathleen Mussatto, Milwaukee, WI

Quality of Life in Pediatric Heart Transplant Recipients

Angela Green, Little Rock, AR


SPCN Membership Form

ALL: Please Print Legibly, For RENEWALS: please print corrections and changes ONLY

DATE: ___________ New: Renewal: Directory Changes:

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Electronic Directory (circle): Y N

Those not choosing electronic newsletter or directory will continue to receive them via US Postal Service.

Name: __________________________________________ Title/Degrees: _________________________

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E:Mail: ________________________________________Home __________________________________

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Work Place: ________________________________________Work Phone: ________________________

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Position/Area of Clinical practice:__________________________________________________________

Areas of Special Interest, research, programs, etc. _____________________________________________

AHA Member: Y N CV Nursing Council: Y N CVDY: Y N

Dues: $20 per year – renewal date is September 1st

to be included in directory printed in November. You may pay for more than

one year if you wish.

Fiscal Year runs from November 1 through October 31st

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New members joining after July 1st

will be up to date through the following fiscal year. (ie: pay August 2010 and

you will be paid through October 31st

, 2011)

Make check payable to SPCN, must be made in United States currency. Dues will be accepted by wire transfer

from within and outside the United States of America. OR The PayPal link for membership dues is available on the website.

Contact Treasurer, Nancy Hagberg, for details. E-mail: [email protected]

Mail to Treasurer: Nancy Hagberg

34 Rugg Rd. Sterling, MA 01564



Communication Site Use

INVOICE

ALL INQUIRIES: [email protected]

Jo Ann Nieves – VP for SPCN

Opportunity or Conference Name: __________________________________

Name of Contact:_____________________________ Date__________ Institution:___________________________________ Phone:_______________________________________ Address:_______________________________________________________ ______________________________________________________________ Email:________________________________________

WEB SITE POSTING:

Advertisement on Conference/News/Opportunities Page $100

Members $50 (this rate applies to individuals only) Information formatted and provided electronically. Will remain on Web Site for 1 year or until outdated.

May link to advertiser’s site Subtotal _______

NEWSLETTER ADVERTISEMENT: Information must be camera ready. Electronic submission preferred. Submissions for Spring Newsletter due February 1. Submissions for Fall Newsletter due August 1.

Full Page $200 Members $150 Half Page $100 Members $75 Quarter Page $ 50 Members $40

Subtotal _______

MAILING LABELS $ 75 (Available ONLY to SPCN Members – not for use by recruiting firms.)

Subtotal _______

BLINDED EMAIL TO ALL MEMBERS (Available ONLY to SPCN Members) For questionnaire/survey No Charge (member only)

For an advertisement – job, conferences, etc. (hospitals/offices only – not for recruiting firms)

$25 (member only)

TOTAL ______ Payment for all advertising must be received in advance.

Make checks payable to SPCN.

Send to: Nancy M. Hagberg, Treasurer SPCN

34 Rugg Road

Sterling, MA 01564-1598

SPCN reserves the right of refusal if any advertisement for any product or service does not meet the goals of SPCN. SPCN may alter the format of a submission to fit the newsletter or web page.

SPCN use only: Date posted or published____________ Date to be removed from web________ Date labels sent ___________



Newsletter: email US Postal Service Directory: email US Postal Service Your name: ___________________________ Both addresses correct in Directory: Correct address: _______________________

Mail Preference

Society of Pediatric Cardiovascular Nurses Newsletter, Spring 2011

Society of Pediatric Cardiovascular

Nurses Newsletter

Editors: Nancy Koster, RN, MSN, CPNP Julie Creaden, RN, MSN, CPNP

Reviewers: Mary Rummel, MN, RN, CNS, CPNP

Jo Ann Nieves, MSN, CPNP, ARNP, PNP-BC

SPCN Goals

o Plan and implement programs, projects and other activities in cooperation and in coordination with government agencies, hospital, and other health organizations to advance the professional understanding and science of pediatric cardiovascular nurses.

o Aid, support, and assist efforts to enhance the discipline of pediatric cardiovascular nursing with the medical field.

o Encourage, foster, and assist participation by members of the medical community in the development of educational programs within the field of pediatric cardiovascular nursing.

o Disseminate information and provide technical assistance to interested professionals, including doctors, nurses, and para-professionals on subjects relating to pediatric cardiovascular nursing.

o Engage in activities which will directly or indirectly improve the nursing care available to pediatric cardiovascular patients and families. o Share ideas on approaches, care methods, and teaching materials currently used by pediatric cardiovascular specialists and patients by publication, seminars, lectures, and similar methods of communication. o Keep a current directory of nurses specializing in pediatric cardiovascular nursing as a reference for patients, specialists and peers. Conduct, participate in, and promote appropriate research endeavors.

Kathryn Sheehan

2083 Montana Ave. NE

St. Petersburg, FL 33703

society of pediatric cardiovascular nurses · in one week we have had a 1.8 kg preemie in the cath...

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