Continuing Andrew’s Story
Andrews update is that he is now 15 years old. G-tube feedings are 12 hours a day. He attends high school and is in the drum line in band. He became much more social after discontinuing feeds during school hours, & upon starting high school. Previously, enteral feeds were run 24 hours a day. Suddenly, he realize he has an appetite and his food choices and tolerance have increased and [...]
Making ‘Every Patient Counts’ a Business Imperative
Check out the New York Times article on Andy Jablonski, his disease, and his great cause here: http://www.nytimes.com/2013/01/31/business/orphan-drugs-for-rare-diseases-gain-popularity-with-pharmaceutical-companies.html?_r=0
Kayden
We have some new warriors following so I wanted to update and introduce kayden. Kayden is an x 34 weeker weighing in at 4 lbs with his intestines on the outside of his body. Kayden was immediately taking to his first surgery at 3 minutes old, and we got the hardest question ever asked of us. We had to choose to treat kayden or let God take him. We were told [...]
The Voss Award
The Voss Award (Two Tickets to the Lincoln Stars Hockey Team and Parking Pass) Hi! I am Andrew Voss. I am a happy, and active 11 year- old boy with short bowel syndrome. Here’s how it all started… In 2001, I was born with volvulus, or twisted intestines as my doctor explained. Due to the lack of blood flow to my intestines, doctors removed 2/3 of my small bowel during a resection surgery, [...]
Cody – Gutsy Grant Award
My name is Cody Wilson. I was born in Seattle, Washington on May 27, 1992. Life for me was hard from the beginning. Being born 9 weeks early saved my life. The doctor found I had developed Necrotising Enterocolitis and before I knew it, I was in surgery. They removed approximately 2 feet of my large intestine and most of my terminal ilium including my ilealcecal valve. To this day, [...]
Owen – Gutsy Grant Award
Owen has had three surgeries: jejunal resection for an atresia on day 2 of life, another resection with jejunostomy/fistula placement on 10/05/12 for a total bowel volvulus and ostomy takedown and further resection on 01/08/13. After his three surgeries, he was left with 30 cm of small bowel. He is currently on TPN for 16 hours a day and an overnight NG feed of 12 mL/hour for 10 hours of [...]
Tony – Gutsy Grant Award
Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go to bathroom as a normal kid would. Tony has an Ostomy Bag for his waste, [...]
Joel – Gutsy Grant Award
Joel Vickoren was born with SBS with an underlining syndrome called Digeorge syndrome. Joel spent three months in the NICU after he was born, and ended up losing all but 10 cm of his small bowel due to a midgut volvulus and jejunal atresia. The Vickoren family has endured hardships they never thought were possible, from both of Joel’s parents having to be separated, Jason (Dad) worked in their hometown, [...]
Austin’s Cupcake Fund
Austin was born with less than 10% of his intestine functioning. As a result, he has Short Gut Syndrome. He is dependent on TPN for nutrition and hydration. This requires that he's is hooked up to an IV at least 17 hours a day. There are many serious medical complications associated with Short Gut Syndrome including TPN induced liver failure and sepsis associated central line infections. As a result, [...]
Antonio Forte Transplant Fund Trust
Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go to bathroom as a normal kid would. Tony has an Ostomy Bag for his waste, [...]
Joshua
Joshua Southern was born April 28, 2006 with gastroschisis. Gastroschisis is a birth defect in which part of the intestines have "ruptured" through the abdomen wall. Within hours of birth the majority of Joshua's small bowel had died and was removed. Multiple surgeries and setbacks awaited us the first part of his critical life. It was nearly six months later that we finally brought our newborn baby home from the [...]
Alex
Living with short bowel syndrome has been quite a journey over the past eighteen years for both my family and I. When I was born I was immediately taken into surgery to remove a large portion of my small intestine: a lifesaving operation. Since, I have been extremely blessed by a healthy and thriving life. I have learned much personal responsibility as a result of my condition and I am [...]
Alana
Alana was born on April 22, 2011 with several medical obstacles to overcome, in addition to her Short Bowel Syndrome, caused by Necrotizing Enterocolitis (NEC). Alana lived with a central line until January 2012, but still receives regular GI feedings through a G-Tube. Alana’s family went through a very emotional and financially draining experience, juggling the acts of trying to care for a chronically ill child in addition to their [...]
Swapna
Twenty-Three years ago Swapna Kakani and her parents did not know her fate as a newly diagnosed newborn with Short Bowel Syndrome. Today, after 40 surgical procedures later, and waiting on a list for an intestinal transplant, they still don’t know what the future holds. Though Swapna has always had a positive outlook on life, even in the most daunting of times, when you think you cannot go on any [...]
Braden
Braden is a 16 year old young man who lives in the Boulder, CO area. Braden is Dependent on Enteral Nutrition as a sole source of nutrition as he can not absorb everything just through eating oral foods. He had to discontinue TPN because of loss of venous access at an early age, but due to being in septic shock due to line infections 7 times he has had his line [...]
Lincoln Journal Star article
Recently I was featured in my local newspaper: The Lincoln Journal Star. Every year they have a sub-section of the newspaper called "Heartland Hero's". People who have or are making a difference in the Nebraska community. This year I was chosen as one of eight for this honor. The paper came out and did a story on myself and also the Short Bowel Syndrome Foundation. Lincoln Journal Star Article This [...]
Both Patients and Physicians Need To Communicate In The Exam Room
Today’s healthcare consumers are increasingly asked to take a more participatory role in their care. For many this is a daunting task, even if the patient relishes the role. There are a myriad of issues undermining patient-physician communication – such as time constraints, lack of comfort with the subject matter, lack of shared language, or even fear – that can make the task of being an empowered patient akin to trying to [...]
Becomming an Active Self Manager of your SBS
How can one have an illness and live a healthy life at the same time? We “positively manage”, that sounds like a double standard, but in all reality, even when you are sick, life continues on. We still have everyday activities to complete, such as household chores, errands, sporting events, family events, socialization, the list goes on. All of these activities are just as important to the chronically ill as [...]
Communication
How often do we hear the term “You just don’t get it” or “You just don’t understand”? A statement expressed or unexpressed sums up a frustrating verbal communication. The goal in communication between yourself and others is that you want the other person to understand what you are trying to explain. Feeling that you are not understood can lead to frustration, stress, anxiety, depression, anger, and helplessness. So communication is [...]