PARENTERAL NUTRITION DOWN UNDER

Parenteral Nutrition Down Under

Welcome to the Kiddies Korner

I am Jodee, mum to Matisse.  Matisse was PN dependent since birth due to Chronic Idiopathic Intestinal Pseudo Obstruction, until she was blessed with a small and large bowel transplant at the age of 10 in 2010.  As well as having a central line for PN, Matisse also sported a GJ (gastro/Jejunal) tube and an ileostomy.  Over the years I discovered hints, tips and resources to help our kiddies make sense of their 'extra' bits, hospitalisations and medical issues.  Here at PNDU Kiddies Korner, Matisse and I will share our findings and hope you will contact us so we can include yours too.  Here tubes, bags and pumps are the norm - the NEW black!

Resources for Kiddies and Parents

Interactive

This is Matisse's pick for kids old enough to use a computer (or comprehend while mum does the mouse work).  The Starlight Children's Foundation in Auckland, New Zealand, have a very cool interactive online program for kids to perform an X-ray, MRI, CT, peripheral blood draw and more exciting stuff.  This is a great way to prepare kids for scheduled procedures which otherwise might freak them out.  Matisse loved it, I think the fact that she was in charge of the situation as opposed to someone else helped take away the fear when the real event occurred.

Click here to go to the Starlight Children's Foundation

Medical Doll

Matisse always attached NG tubes and ostomy bags to her dolls and teddy bears, in fact I began to worry that people would think she was like Sid, the mean kid on Toy Story.  However this was very therapeutic to her and I guess it made her feel like she was not the only one with 'extra' bits. She also took her favourite Barney doll to theatre every time she went and often Barney would come out with the same bits as her like a new GJ tube or Hickman line.  However it was after a particularly bad ICU stay that I made the 'Medical Doll'. This poor girl has never been named but she has undergone many a medical procedure.  As you can see she has the same bits that Matisse had.  I just used old/spare medical supplies that we had and hot glued them to a doll brought from a toy store.  She also has a bung where Matisse could give the doll shots. I let her use a real syringe and needle under supervision, this helped her when she knew she had shots of her own due.  Both Matisse and her younger brother loved playing with the medical doll.  I tried to let them use real supplies like syringes, alcohol wipes, IV lines and drainage bags but I also brought a toy medical kit which had things that I had not yet been able to acquire from the hospital, like a blood pressure cuff.

Make A Wish

When Matisse was a toddler, a member of the Make A Wish Foundation said to me to keep MAW in mind when Matisse was older.  I replied "Oh no she is not dying, we can not apply for Make A Wish".  First off I was totally in denial about Matisse's condition, knowing it is life threatening and accepting it are two different things.  Secondly a child does not have to be dying to receive a wish. Sadly, their condition does need to be considered life-threatening.  Matisse received her wish just months before her 7th birthday and it was AMAZING!  


Check out Make a Wish New Zealand or Make a Wish Australia

Support for Parents

New Zealand


Bringing Hebe Home

An informative DVD produced by parents Tina and Andy.  A must-see for any parent with a child on HPN.   For a copy email us or Tina and Andy at [email protected] .


The Kids Foundation

The Kids Foundation is the welfare arm of IDFNZ and is responsible for caring for suspected or diagnosed PID children, teenagers and their families, as well as bone marrow transplant (BMT), liver transplant and now small bowel transplant children. 

The Foundation offers members practical, emotional, medical and social support.


New Zealand Ostomy

Mainly geared towards adults but their magazine has some good information.


Starship Children's Hospital

Starship Children?s Health, located in central Auckland, is part of Auckland District Health Board, New Zealand's largest public healthcare provider. 


Starship Directory

A directory of departments and contacts at Starship.


Starship Family Information Service

Located on Level 3 near the outpatient department at Starship Children's Hospital.  The service is free and worth checking out while at Starship.


Kids Health

Lots of general info here.


Sands

Still birth and new born death support.


TABS 

Trauma and Stress Birth 

Australia


The Littlest Heros Project

A non-profit based organization founded in January 2008, made up of professional photographers nationwide that provide free photo sessions to our nation's Littlest Heroes.


NiDKiDS

A program that provides information and support to families, medical and allied health practitioners from all over the world that support children and young people diagnosed with Neuronal Intestinal Dysplasia (NID) more commonly known as Slow Transit Constipation (STC).


Australian Council of Stoma Associations


Ostomyoz


Hirschsprungs and Motility Disorders Support Network

An organization that makes it possible for ordinary people and families, whose children suffer from Hirschsprung's Disease and other gastrointestinal motility disorders to support each other. 

International


aboutKidsGI.org

Support and information about digestive disorders in kids and teens. 


Short Gut Wiki

Useful info added by parents of children with short gut syndrome.


Oley

Support for those on PN and Enteral Feeding.


Complex Child

Complex Child is a monthly online magazine written primarily by parents of children with special healthcare needs and disabilities.

Products

New Zealand


Exqusite Baby

Onesie extenders


Moose Baby

Designed to take the sting out of shots and helping kids with needle phobia - Buzzy 4Shots


Australia


International


Gus Gear

Fun, Functional covers for ostomy bags, feeding tubes and central lines and more.


One Step Ahead

Onesie extenders.

Blogs