The topic for today, day four of Feeding Tube Awareness Week is:
We can all use a little help: Friends and Family

I feel lucky to write about this topic, because my closest loved ones have been such wonderful examples of how to be supportive of tube-feeding. So, I will be using their actions as the template for today’s post.

  • Be there: Tube feeding is a learn as you go kind of thing. Sometimes just having someone to look over your shoulder and talk something through with is all you need.
  • LOVE the tube. Be PROUD of the tube: Even if the caregivers are struggling with it. Early on my mom said to me: “I love Esmé’s tube, it saved her life.” She helped me see Ezzy’s tubie in a different light…to not just accept it, but to embrace it. It was just what I needed. (Thanks Mom!)
  • Help teach other people about tube feeding: It takes some of the pressure off the caregiver
  • Learn how to use the tube: Most of my closest family members can feed, vent, and give medications with Esmé’s tube. These are essential basics that anyone who is going to care for Ez would need to know. Anyone who doesn’t show interest in and ability with these activities cannot be alone with Ez, period. 
  • Learn by doing: Offer to help. New tubie caregivers are just learning too! They may not want you to know it, but they do things wrong all the time. (Just look at their ceilings, rugs, and clothing!). You can learn with them…and prove your skills early on.
  • Ask before doing: Unless it is an emergency and/or you have already been trained in doing this stuff by the parent…ask “Should I vent him now, he seems uncomfortable?” or “Is it ok to start the feed now?” It helps the caregiver feel confident, but, more importantly, it keeps everyone on the same page…it might be bad timing to vent, or the feed might not have been started for a good reason. NEVER feed a tubie by mouth without express permission from their parents each time.
  • Ask questions: It is ok to say you don’t know how to do something for the hundredth time!
  • Take instruction: Let them know they are the main caregiver, but that you are there for support in whatever way they need.
  • Speak up: If you are worried or see something that doesn’t seem right…but try not to be too pushy or anxious.
  • Don’t pity the child or the parent: There is no need for pity. It doesn’t help anyone.
  • Treat the child as you would any other child: Be careful, thoughtful, fun, observant…
  • Finally, let them vent (pun intended). Sometimes we just need to give voice to our fears and frustrations. This is something my parents have been particularly amazing about. In fact just yesterday my father accompanied me on a ride to the pharmacy. I was stressed about the prescription and the pharmacist. Dad let me vent so that I would be calm enough to go in and handle the situation without my head exploding. (Thanks, Dad!)
I am super lucky to have such an exceptional support system. Not all families and friends are as understanding, thoughtful, invested, eager, (occasionally slightly pushy), and available as my family and friends are…they are a big part of what makes me strong and a big part of keeping Ezzy as healthy and happy as she is.

Check out Brandis Goodman’s blog post Feeding Tube Awareness about this topic.

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