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Appendix A Resource Guide

Suzanne Borkowski, MS, PNP, ETN

The pediatric surgical nurse of 2006 faces the challenge of meeting the wide spectrum of needs for infants and children receiving modern pediatric surgical care.

A great deal of “technological care” has shifted from hospitals to home and community. Parents, families and caregivers are asked to assume more responsibility for their child’s care than ever. Additionally, children may suffer from acute illnesses that require high-tech interventions such as intravenous antibiotics via indwelling lines.

Support groups are an integral part of this adjustment period and process. They are an important therapeutic intervention to create an opportunity to acquire information, new knowledge, coping strategies, and to share experiences. Appropriate resources and support groups of various types are available for many diseases, disabilities, conditions, and needs. These resources may be contacted via national organizations, government agencies, the internet, layperson email groups, parent-parent led and professionally led community groups.

On-going education and information regarding support groups and resources foster quality care. Be available and communicate with openness and honesty. Families will appreciate your support, concern, and trust.

Family Resources and Product Guides

Please note that references are correct as of Publication date. Resources are

updated on the APSNA website at .

  1. American Burn Association

ABA Central Office – Chicago

625 N. Michigan Ave., Ste 2550 Chicago, Illinois 60611

312-642-9260 - T

  1. Angel Flight North East Municipal Airport

492 Sutton Street, North Andover, MA 01845

800-549-9980

(Free transportation for those who cannot afford commercial transportation)

  1. American Cancer Society

National Headquarters

1599 Clifton Rd. NE, Atlanta, GA 30329

800-ACS-2345

  1. American Heart Association

7272 Greenville Ave., Dallas, TX 75231-4596

800-AHA-USA1

  1. American Lung Association

National Headquarter Office

61 Broadway, New York, NY 10006

212-315-8700

  1. Biliary Atresia and Liver Transplant Network, Inc. (BALT)

3835 Richmond Ave. Box 190 Staten Island, New York 10312

718-987-6200

  1. Biobrane biosynthetic wound dressing for burns

UDL Laboratories, Inc.

1718 Northrock Court, Rockford, IL 61103

  1. Brain Injury Association

105 North Alfred Street, Alexandria, VA 22314

800-444-6443

  1. Brave Kids

800-568-1008

  1. Burnsurgery.org

Education for Burn Care Professionals

Children's Liver Association for Support Services (C.L.A.S.S.)

27023 McBean Parkway #126

Valencia, CA 91355

877-679-8256

  1. Children’s Wish Foundation

PO Box 28785 or 8615 Roswell Rd.

Atlanta, GA 30358

800-323-WISH; (fax) 770-3930683

  1. Crohn’s and Colitis Foundation of America (CCFA)

386 Park Avenue South, 17th floor, New York, NY 10016-8804

800-932-2423

  1. Cystic Fibrosis Foundation

6931 Arlington Road, Bethesda, MD 20814

800-344-4823

  1. Cystic Fibrosis

Email community (CF information and support)

Cystic-L or Cystic-l.org

  1. EA/TEF Child & Family Support Connection (National office)

111 West Jackson Boulevard, Suite 1145

Chicago, IL 60604-3502

312-987-9085 Phone 312-987-9086 Fax

or

  1. Gastrostomy Email Support Mailing List

The family introduces the child and gives follow up, share experiences, strategies,

suggestions, and personal remedies for care of a GT.

Ward Scarff, Gtube List owner

or

  1. MUMS

Mother’s United for Moral Support: National Parent Support Group

150 Custer St., Green Bay, WI 54301-1243

877-336-5333

  1. Pull-through Network

2312 Savoy Street, Hoover, AL 35226-1528

205-978-2930

  1. National Dissemination Center for Children with Disabilities

P.O. Box 1492, Washington, DC 20013

800-695-0285

  1. National Kidney Foundation

30 East 33rd St., New York, NY 10016

800-622-9010

  1. National Rehabilitation Information Center

4200 Forbes Blvd Suite 202, Lanham, MD 207206

800-346-2742

  1. National Spinal Cord Injury Association

6701 Democracy Blvd. Suite 300-9, Bethesda, MD 20817

800-963-9629

  1. National Transplant Assistance Program

150 North Radner Chester Rd. Suite F120, Radner, PA 19087

800-642-8399

  1. Pediatric Home Care Association of America

228 Seventh St., SE, Washington, DC 20003

202-547-7424

  1. Phoenix Society for Burn Survivors, Inc.
  1. Ronald McDonald Houses Charities

1 Croc Drive, Department 014, Oak Brook, Il 60523

630-623-7048

  1. SIDS Alliance

1314 Bedford Ave. Suite 210, Baltimore. MD 21208

800-221-7437

  1. Spina Bifida Association of America

4590 McArthur Blvd. NW, #250, Washington, DC 20007-4226

800-621-3141

  1. TEF/Vater International Support Network

15301 Greyfox Rd., Upper Marlboro, MD 20772

301-952-6837

  1. Tracheo-Oesophageal Fistula Support (TOFS) International office

St. George’s Centre, 91 Victoria Road, Netherfield

Nottingham, England NG4 2NN

T: +44 (0) 115-961-3092; F: +44 (0) 115-961-3097

  1. United Ostomy Association of America, Inc. (UOAA)

A new group is a national non-profit organization. The goal is to act as an umbrella organization for geographical focused support groups.

Ken Aukett, President of the Organizing Steer Committee

or

  1. Patient Teaching Material

CR Bard Medical Division

8195 Industrial Blvd., Covington, GA 30014

800-526-4455

Product Guide

  1. 3M Health Care. Steri-Drape ™

St. Paul MN 55144-1000. 1-800-228-3957

  1. Cook Critical Care

PO Box 4195, Bloomington, IN 47402-4195

1-800-457-4500

  1. Convatec

100 Headquarter Park Dr. , Skillman, NJ 08558

800-422-8811

  1. Hollister

2000 Hollister Dr., Libertyville, IL 60048

800-323-4060

  1. Kimberly Clark/Ballard Medical Products

12050 Lone Peak Parkway, Draper, Utah 84020

800-528-5591

  1. Mentor Corporation

Self-Cath Coude Olive Tip with Guide Stripe (30/box)

8 Fr: order number 808; 10 Fr: order number 810

201 Mentor Drive, Santa Barbara, CA 93111

1-800-328-3863

  1. Nutra/Balance Products

Drink boxes: 27/case

Cookies: 12/12 count

7155 Wadsworth Way, Indianapolis, IN 46219

1-800-654-3691 (product information only)

  1. Specialty Surgical Products, Inc. Silicone Silo Bag-clear cast.

Victor, MT 59875 1-406-951-0102