Resources for Kids with Central Lines

There are tons of resources out there for kids with central lines, Short bowel or on TPN. (Adults have used them to explain their central lines to younger family members too)  I have helped my home infusion company produce many educational resources but my favorite thing they have produced is their children's books and the Strap Wrap.  If you are interested in any of these books or the strap wrap just email Abby at abrogan@thriverx.net

My Special Line: This early reader or read-to-me book addresses the importance of good line care in a simplified manner with rhyme and repetition. The book’s message is that a central venous line is special and needs to be kept safe, clean and dry. 

Let's Learn About Central Lines: This new book for elementary aged children discusses central lines, basic central line care and how children can begin to take an active role in caring for their central venous line (CVL).

Including:

•      What is a CVL

•      Who might need a CVL

•      How they can help keep their CVL clean and dry  

HENRY IMAGINES, An Adventurous View of Short Bowel Syndrome: 

This is book was written by a father about his son with Short BowelSyndrome (SBS) - a condition many children and adults are living with all over the world.

      By using his imagination, Henry takes the trickier parts of everyday life with an ostomy, G-tube and central line and turns them into an adventure! If your child or a young person in your family, school or neighborhood has this condition or has an ostomy, central line or G-tube this book is a great way to help them learn and have fun.  To order your copy visit: www.createspace.com/4806456

Strap Wrap: A medical free alert device for children or adults on IV nutrition support. 
The strap can wrap around a seat belt strap,  purse strap, diaper bag or backpack strap.  The straps contains medical a short medical history, medications, allergies, Dr. contact information and emergency contact information.  It was created a grandmother of a consumer of BioRx the parent company to ThriveRx.  

Watch this video to see the Strap Wrap in the news:  http://www.clipsyndicate.com/video/play/746694

If you are interested in any of these books or the strap wrap just email Abby at abrogan@thriverx.net.

Central Line Care Videos produced for Boston Children's Hospital starring Ellie.

Last winter we had a the pleasure of helping Boston Children's Hospital Home Parenteral Nutrition Team and the Dana-Farber Cancer Institute create a series of videos on Central Line Care.  Ellie and I had fun we honored to be a part of something that we hope will help others just like us.  

Oh how I wish we had these videos to watch when we were starting out.

To watch all the videos visit: childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos

Here is a sample of what we did:

Hand Washing:

Using Hand Sanitizer:

Scrubbing the Hub:

Connecting Tubing:

Changing the Dressing:

I heard from another parent that one or more of these videos are playing on the patient channel at Boston Children's all the time as well.

Ellie was in the Boston Globe again!

Make-A-Wish accepting frequent flyer miles

See the whole article at: http://www.bostonglobe.com/lifestyle/travel/2014/05/10/the-tip-make-wish-accepting-frequent-flyer-miles/U5yXAQGSafN1TgRBEvD8hM/story.html

Last fall after our trip we talked to Make A Wish about helping them in anyway we could. Ellie and I went to a basketball game at a local college to help raise awareness and said we would be willing to do more. They asked if they could use some pictures of Ellie for an internal newsletter and we sent them 5-6 photos from the trip saying they could use whatever they wanted if it helped others get a wish too.

 We never thought we would wake up to Ellie in the Globe again.

 If you have miles that you are not planning on using or can't use before they expire, please consider donating them! Once donated, the miles never expire. Participating airlines include Delta, US Airways, and United/Continental. More information at www.massri.wish.org/miles.

Sharing Your Story Can Be Such a Blessing to Someone Else!

I was searching the internet for something else tonight and found this.



It was heart warming to see, and I loved the message.  We hear from families still today that say our blog helped then when they needed it the most.  Even though we don't update nearly as much as we should we keep it up and running just so it can be there to help another family when they need it.  If you have a blog, Facebook page or group that you want to spread the word about just let us know!