“Support For Life” is a brief, educational summation of the Oley Foundation’s mission. In this 15 minute DVD, viewers are introduced to the different kinds of nutrition support, some of the people sustained by this therapy, and the ways in which the Oley Foundation works to improve their quality of life. As an organization, Oley seeks to unite a widely dispersed community of chronically ill patients, empower them through education, and give a unified voice to its members. Like the Foundation’s other work, this video brings the facts together in a concise, easy to understand manner which will improve your understanding of home nutrition therapy.
A Day in the Life of a Child
In this video you are welcomed into the household of the Miller family. The Millers have three children, one of whom is tube fed. Jessica has been dependent on tube-feedings since birth, and her family is prepared to show you just what that means. Through close relationships with doctors, nurses, and dietitians, the Millers ensure that Jessica gets the nutrition she needs to grow. They discuss some of the ways that tube feeding became a routine in their home and the ways that they’ve made it fit in to Jessica’s school and social schedules. They share tips for keeping a sterile environment in a house with three children, and tips for helping Jessica fit in with her peers. Jessica’s mom advises that you “just follow the steps and get into a routine. Once you can do that, everything is pretty easy.” If your child is new to tube feeding, this video is an excellent resource to give you a glimpse of another family just like yours.
This 10-minute video serves as an informative and introductory guide for adapting to life with a Mic-key low profile feeding tube. “Low profile” means that the Mic-key tube lies very close to the patient’s body and does not stick out. It’s slim design allows more air to circulate around the stoma site and makes it easy to care for. The Mic-key tube uses a balloon to hold it in place and comes with several important accessories, including two types of extensions sets and an anti-reflux valve.
For a brief time investment, this video can provide you with a comforting introduction into the use of a Mic-key feeding tube. The video covers important topics and some helpful hints for more comfortable feeding. As you’ll learn in the video, “Life with Mic-key is not much different from life before Mic-key.”
“Mealtime Notions — The ‘Get Permission’ Approach to Mealtimes and Oral Motor Treatment.” Marsha Dunn Klein, MEd, OTR/L
The “Get Permission” approach is a feeding method to help children progress in their therapeutic oral motor, and mealtime treatments by minimizing resistance and maximizing cooperation. Marsha Dunn Klein narrates effective ways of encouraging your child to permit enhanced nutrient intake. There are two basic concepts which make this approach successful:
1. The parent sets the goals.
2. The child sets the pace.
This video explores the development of trusting feeding relationships, understanding the child’s pace, and strategies for increasing permissive behavior. Tools discussed in this video include an introduction to the “sensory continuum,” a description of the “around the bowl technique,” and tips for removing the stress from your child’s mealtime.
2006 Annual Conference, Salt Lake City, Utah
Khursheed Jeejeeboy, MB, BSC, PhD FRCP, Emeritus Professor of Medicine at the University of Toronto; has published 300 papers, and is the winner of many distinguished awards.
Dr. Khursheed Jeejeebhoy is recognized as one of the founders of TPN therapy. When he began as a gastroenterologist in 1970 there was no enteral nutrition, there were only the very beginnings of parenteral nutrition, and there were no pumps or catheters to administer the therapies. As he puts it , “…the only cases that were sent to me as a young gastroenterologist were the ones that the other G.I. guys didn’t want, and the reason they didn’t want them was because they were basically dying at that time of short bowel or inflammatory bowel disease or malnutrition… so I rapidly acquired a cliental of dying patients who I had to do something about.” Fast forward 30+ years to a world where parenteral and enteral nutrition now sustain those people who once made up Dr. Jeejeeboy’s “dying cliental.” His creative solutions and innovations helped bring clinical nutrition where it is today.
This is why the Oley Foundation was so honored to have Dr. Jeejeebhoy open our 2006 Annual Conference in Salt Lake City. During his welcome speech, Dr. Jeejeebhoy addressed “Home Parenteral Support, The Past, Present, and Future.” He truly is a guru and one of very few who have been involved in TPN’s past and present. Hear his answers to some of TPN’s toughest questions:
-“From an ethical standpoint, what do you think we’re going to be facing, down the road, when our insurance companies begin to put pressure on this kind of community to say ‘your going to have to have a transplant.’”
-“Are the diseases that we associate with TPN, such as liver and bone disease, strictly because we haven’t gotten the best formula or are there other issues that create these problems?”
-“What is missing from TPN that we need to have?”
Main Session: What is Rational Management?
By: Lyn Howard, MB, FRCP - AMC
Panel: Michael Medwar
Terry Clemmer, MD - LDS Hospital
Josie Stone, RN, NP
Rational management – or patient care based on clinical research and experience – is an ideal of care for homePEN consumers, customized for the individual. Considerations of rational monitoring range from how to communicate with an inexperienced clinician, to establishing a collaborative team from the people involved in your care, as well as covering practical notions like how often you should reassess your TPN/EN formula, and test bone-mineral density. Rational management is a way of maintaining your nutritional program to achieve the best quality of life.
This unique DVD brings together some of the greatest minds in clinical nutrition. Audience and panel members alike generate an active discussion that breaks apart the concept of rational management, and builds it back up again into a personalized plan for your success.
Session: Being All You Can Be.
Moderator is Cheryl Thompson, PhD, RD, CNSD
“Being All You Can Be” is one of those expressions that we’re all familiar with, but means something different to everyone. This session opens with “Thompson’s Top Ten Tips” for “Fostering Coping Skills and Resilience in Home Enteral Nutrition Consumers,” then delves into the lives of 5 amazing consumers. The stories and advice these 5 consumers share are so moving and inspirational that they really should speak for themselves.
Oley’s president, Rick Davis describes how he came to accept HEN. “I expected that I would be able to eventually swallow. The bottom line was, after about a year, the consensus among all the specialists was that I was never going to swallow. That was when I decided that I was going to become the best tube feeder I could.”
Dr. “Flute” Snyder describes how he finds humor in his situation. “It’s just been a hoot all the way through”
Shawn Boulette says, “I try to take negative thoughts and experiences and put a positive spin on them. Sometimes going into the ER is just crazy and by the time you leave, you feel like you‘ve been in a war zone. I‘ll just try to think of something positive about that, like ‘Well, they had better scrubs than last time. And this time I only had to wait 4 hours instead of 6.’”
An Oley Regional Coordinator, Carol Pelissier says, “I have had to focus on how to do things rather then why I can’t. Sometimes what we do to survive is different from what we do to live and we have to know the difference.”
Teenage TPN’er Roy George shares how he handled his earliest concerns about beginning school “And then it was time to start school, what do you do? Do you tell your friends, do you not tell your friends?”
This candid session is followed by an interactive dialogue between audience and panel members. Both portions of the DVD provide remarkable insight into being all you can be.
Session: Reducing HPN Dependency
Hosted By: Lyn Howard, MB, FRCP
The title of this breakout session speaks to every TPN patient’s most treasured dream. The substance of the video is no less intriguing, as Dr. Howard, a household name in clinical nutrition, presents a concise explanation of how to reduce TPN dependency. The tips and tricks she shares can apply to anyone using TPN and her step-by-step approach to reevaluating a “limited bowel” is encouraging and enlightening. You should know that the size of the sips your taking effect your hydration as much as the composition of the drink itself. You must also know that your hydration status is inextricably connected to your TPN dependency.
Break Out Session: Understanding Micronutrients
Reid Nishikawa, Pharm.D., BCNSP, FCSHP, A.S.P.E.N.’s 2006 Distinguished
Nutrition Support Pharmacist of the Year
Nutrishare, Inc.’s Coordinator of Clinical Services and Director of Research.
Did you know that our micronutrient toxicity tests will be erroneous if done in the wrong test tube? Were you one of the 66% of TPN users found to have elevated levels of manganese? What do you know about the relation between copper concentrations and your bilirubin levels? These and other details are covered by Reid Nishihkawa, PharmD. By watching this breakout session you can give yourself an advantage when it comes to understanding micronutrients.
In this video, Dr. Nishikawa speaks one-on-one with the mother of a TPN consumer who suffered GI damage after radiation treatment of lung cancer. This woman and her daughter have coped with a number of catastrophic illnesses and understandably, along the way, understanding micronutrients was not a priority. Watch as Dr. Nishikawa helps her develop a working knowledge of micronutrients and their relevance in her life, through an interactive question and answer period.Dr. Nishikawa then works with the husband of a cancer survivor whose multiple surgeries left her with short bowel syndrome. After a crash course in the major micronutrients and their purposes, they hold down a conversation about toxicity levels, the warning signs, and what it means when there are no warning signs.