Sunday, January 07, 2007

Organization-two ways

First off your daily visual dose for those of you that just like our girl:

Now onto the news for the day-

One of the hints of advice that we got in the early stages of this adventure was from the folks at the Oley foundation that specializes in people (big and little) who are on either TPN or tube feeds. Their bit of advice was to get organized when you go home because the amount of stuff that coes from the delivery truck is overwhelming. Our supply companies are local so the orders come once a week and are manageable in size but it still is quite a chore to handle all of the sorting, counting and checking of each order to make sure we don't get to day seven of a week long oder and find out at 5:30 PM that we are short one tiny plastic piece that is vital to Ellie's TPN for the night that is due to start pumping at 6 PM.

I am learning that another of Abby's hidden talents is dealing with shipping and receiving. This goes along with her uncanny ability to talk to people like plumbers, electricians, and Perry, the guy with the IV company who she is now on a first name basis with who bends over backwards to make/keep Abby happy. I'm glad that I am on her team.

We are getting good at the organization part and have each part in its neatly labeled bin instead of the box full of stuff that would live in the corner if i were responsible for the project. Now we can set up her TPN for the night in around 20 minutes start to finish. If, that is, we remember to pull it out of the refrigerator at noon so it is warm. If we forget, one of us has to hold the icy bag next to our body to warm it up......

A need for another kind of organization is also coming to the surface and we have been talking about establishing an organization to give information, support and advice to pediatric short bowel kids and their parents. We found out long ago that there are a surprising number of kids with this condition around the world and around the country and so far it has been a combination of digging through the internet, participating in obscure email chat rooms and meeting parents at children's that has given us information about all sorts of issues that concerns short bowel kids.

Whether it is the little tip to use Panty liners to dress a G tube or the huge tip to get Ellie on Omegaven, there is a huge amount of information out there and we want to get it together somehow to make it easier for the next family that hears the word short bowel syndrome, TPN, and liver damage....

The Oley foundation has been great, but it covers such a wide range of ages and diseases that it is tough to find folks that are in your boat. Having a short bowel group would accomplish this task and share what we learn with the world.

We're not sure how to make this happen but I have some ideas about how to get the ball rolling.


Anonymous said...

On behalf of the junkies, thanks for the fix. If there's any justice, the first thing she'll tell her father will be, "I"m waiting in the car."

kate said...

I love the thought of you guys holding the cold bag of TPN against your skin to warm it up for her. That is true love.