Tuesday, November 22, 2011


Jackson has been on TPN before at the hospital. TPN as I mentioned before is basically all of Jacksons' nutrition pumped through tubes into his central line. Because Jackson hasn't been eating, they sent us home on the TPN.

We have never had to do TPN at home, and it is definitley a learning process.

Last night the Home Health Nurse came to our house and taught us how to prime the pumps and get Jackson hooked up to his TPN. The TPN runs continuously for 12 hours from 8PM to 8AM and comes in two seperate bags- one for Lipids, and one for Electrolytes. And because Jackson doesn't have an IV pole here at home, he gets to sport a very stylish backpack that contains the pumps and the bags of fluid.

Lipids are a fatty substance that is white and it is sensitive to lights.
Electrolytes look like water, but then you add the vitamins that come in two tiny little vials, and the clear electrolytes change color to a pale yellow.

Even though the pumps run the fluids into Jackson for 12 hours there is still a little bit of fluid left over in the morning. The nurse suggested that we either throw the left over TPN in the garbage, or we could use it as plant food because of it's high nutritional value. So, this morning I dumped the left overs into my one and only plant- we'll see if it really does help.

I am just glad that even though he isn't eating, he can get some nutrition from another source.
Here are all the supplies:

And the Lipids:

Getting the vitamins ready to add to the electrolytes:

Adding the vitamins:

Shaking the bag to mix it together:

Adding new tubing to the pump:

Priming the TPN pump:

Putting the tubing into the bag:
Making everything fit into the backpack:

Hooking Jackson up- cleaning the caps:

Flushing the lines with saline first:

Now hooking up the TPN tubes:

Pushing the "Start" button: Jackson took this picture, and was so proud of it!

Wearing the backpack. It weighs almost as much as he does.


  1. Crazy! Who is your home health agency? We use IHC and Annabelle's TPN at home is all in the same bag, no separate lipids. It is the best thing ever! I'm so glad he only has to do 12 hours of it though!

  2. Wow that just brought back memories, jack you cam borrow slim (my iv pole) anytime. So glad the TPN will keep you healthy and keep the weight on. You are amazing buddy keep it up.

  3. Looks tasty. Okay, not really. But I'm so happy he gets all that good nutrition to help him be healthy and strong. Gosh, the stuff in his backpack is a lot cooler than the stuff in mine! But then Jackson is pretty dern cool...so that makes sense.

  4. Wow what a process! So glad you guys are home for Thanksgiving! I think you should each get an honorary medical degree after all of this.

  5. If you want more information about the TPN, or want to talk with other families who do TPN at home, check out the Oley Foundation. We are a national non-profit that offers information and peer support to families dealing with tube and IV feeding at home. Everything is free. Check us out at www.oley.org, or call us (800) 776-OLEY.

    In particular, if you'd like a how-to check sheet for hooking up to TPN, email me at dahlr@mail.amc.edu

    Also, some kids use a rolling backpack or push toy to carry the TPN since it is so heavy. Another tip if you are running into trouble with the line catching on things -- ask for curly tubing by Vygon (information at http://vygonusa.com/products/lectrospiral-m-fll-1-2mm-100cm_639_00115990?PHPSESSID=7ad6601ff01fdaba76fbf88fcfc14af5

    Best of luck!

    Roslyn Dahl
    The Oley Foundation

  6. You are all amazing. I'm so glad to see you at home and see those cool "fire" jamies. Trev will be excited :) Thanks for sharing cuz it makes me feel not quite so far away. Love you!

  7. Wow,are they going to hire you guys as nurses after all this? You have so many new and amazing skills!! I can't believe all that you have to do. Have a wonderful Thanksgiving. We love you guys, and you are always in our prayers.


Thank you for taking time to comment. I read each and every comment to Jackson and they brighten his spirits. He loves that you are supporting him through reading his blog.