Monday, December 08, 2014

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.

Thursday, July 24, 2014

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.

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.

Monday, May 12, 2014

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.

Thursday, March 27, 2014

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!

Saturday, November 09, 2013

A Very Wet Day

Thursday was a wet day, A very wet day. We were up very early to slog through Honolulu traffic to Hanauma Bay, a marine reserve that was set up to conserve and manage a very healthy and very accessible coral reef near Honolulu.  We were told to get there early to make sure that we had a space in the parking lot (Make A Wish made arrangements just in case it was jammed) and we were there for 9:45 AM, along with about a zillion GoPro-toting tourists that really didn't get the concept of don't stand up on the reef.




But fortunately, I had forgoten that Abby Brogan also moonlights as an underwater superhero and proceeded to escort/drag/carry Ellie past the hordes of googins and out into deeper clearer water where the novices didn't dare.  What they found there was nothing short of spectacular.  Turtles, live corals, and fish like Ellie and I had never seen before.

 
 
Ulua, or trevally, cruising the reef.



Ellie showing off the surface dives that she practiced in the pool all summer.
  

Abby the Underwater Superhero showing off on the bottom


One very cool urchin.


A school of convict tangs

video



One of the many poses that Abby used to escort Ellie around the reef.
 
 
  


All told Ellie and Abby were in the eater for almost three hours with one short break for Elecare and snack. Will, was happy as could be to patrol the shore wade in the warm water and throw pebbles.
Posted by Picasa

Friday, November 08, 2013

Dry Day

Waterproofing Ellie has been very successful for us over the years:  Some Press n' Seal on the CVL cap and two sheets of Tegaderm over the whole site and she is good to go.  but one of the downsides of this is that more than one day of this makes  her skin raw and sore.  So we generally try to have a dry day after every wet day to let her skin recover.

For our first Hawaiian dry day we took off for the center of the island to the Dole Pineapple plantation, a spectacular tourist trap complete with a narrow gauge train, the World's largest maze (like a hedge/corn maze but with hibiscus)  and more pineapple desserts and concoctions than you could imagine.  The kids loved it and we had a blast and we were home early enough to have a rest before Ellie got to do one of the other things on her Wish:  A luau.



The Brogans, via the sea!



And yes, Ellie was on stage more than once.


But this was all a warmup for the coming wet day when Ellie finally got the chance to swim on a coral reef.

Tuesday, November 05, 2013

Two-fer

Charismatic- (karizˈmatik/)
Adjective. exercising a compelling charm that inspires devotion in others.

 Megafauna- (ˈmegəˌfônə/)
noun .  the large mammals of a particular region, habitat, or geological period.

Monday was a good day.   Especially for a girl with her heart set on seeing big ocean critters.
A spectacular dolphin experience in the morning:

Followed by a Do-It-Yourself turtle safari with Abby in the afternoon:




Yes, Monday was a good day.  

For Will as well: