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Feeding Tube Awareness Week- Day 6

Today's topic: What do you want clinicians to know about the day-to-day life with a feeding tube?

I touched on this a bit yesterday but here are a few things. (here comes the bulleted list :) Some of these aren't directly related to day-to-day life with a feeding tube, they're just things I thought of while I was making my list. :)
  • Remember that for many parents, their child's feeding tube will be the first one they've ever seen. It's not new to you, but it's new to us and there will be a learning curve so be patient while we ask a million questions.
  • If you don't have time to answer our million questions, PLEASE give us access to someone knowledgeable who CAN answer them. On our first visit with the GI doctor, she stepped out of the room for a minute and came back with her nurse. She said to the nurse, "Come in here and meet Raya and her mother. You'll be talking to her a lot over the next few months." At the time I was still not comprehending the seriousness of the whole situation so I thought it was an interesting way to introduce people, but she was right. Rebekah and I spent a LOT of time on the phone and sent a LOT of emails back and forth, which saved us countless trips to the doctor's office for smaller things that could be solved via phone call or email. Not only that, but it alleviated a lot of the frustration that can come with trying to get a hold of a doctor when something is wrong. I've never had to worry about how I'd be able to get in touch with the doctor. HUGE for a parent of a tube-fed child!
  • Parents of children who have been tube fed for a long time are a FABULOUS resource for tubie newbies. :) If they have tips and tricks they can share with you, listen and learn so you can pass them on. You can follow HIPAA rules but still put tubie parents in touch with each other if they give permission. There are also great resources to refer parents to, such as Feeding Tube Awareness, Mommies of Miracles, and POPSICLE. These are things that I wish I had known about MUCH earlier in the game.
  • If it's your first time seeing my child and you don't agree with some aspect of her treatment that has been put into place by another specialist, PLEASE don't interrogate me as to why we are taking that particular course of action. I am not her doctor and I can't always explain to you why a certain diagnosis was made or why we're doing what we're doing. I will do my best but know that asking me accusing questions like, "Well do you think your daughter REALLY has cerebral palsy?" and expressing your opinion, such as, "I see no reason to put food through a feeding tube. That's not what they were made for. Feeding tubes are for formula." does nothing but put me on the defensive and make me feel like you're attacking ME. If you don't like something you read in her chart, please take it up with whoever put it there.
  • If your patient is mobile, PLEASE recommend/prescribe the Zevex Infinity pump rather than the larger & more cumbersome Kangaroo Joey pump. It will make day-to-day life much easier. (read more about the two pumps here)
  • Speak slowly if what you're saying is important.
  • If we discuss something important and you write about it in your chart note or report and send a copy to our pediatrician, it is a good idea to provide ME with a copy of it too. Parents are SO sleep deprived. We may not remember what we ate for breakfast this morning (and that's IF we remembered to eat breakfast) and some of the words you use might go right over our heads. If things are written down for us, we can remember them better and it's important for us to know what is going on with our child. Plus, that way when we google things (since we WILL google things) we'll be sure to do it with the right terminology.
  • A little compliment about how we are doing with the care of our child goes a LONG way. One time I needed copies of some of Raya's medical records to send to another doctor. I was reading through one of the letters her doctor had written to a specialist out of state and I was so pleasantly surprised to see that she had said some very complimentary things about me to him. She has told me several times that I'm doing a great job taking care of Raya and I can't even tell you how good that feels coming from someone that scared the heck out of me the first time we met her. :) This is a very hard job, and we NEED a little encouragement from our doctors once in a while.
  • Realize that even though a feeding schedule makes sense and doesn't seem that complicated on paper, it may not be a realistic expectation to put it in practice all the time. We will do our best, but it just might not happen exactly how it's supposed to. Try to be reasonable. (and asking me to bottle feed 8 times in a 24 hour period might not fit that category)
  • Don't be offended if we disagree with something or get a second opinion. We are just trying to do right by our child. If we choose to go with an option that is not what you presented, please respect that and know that we did our research and made the decision that we felt was best.
  • If you don't know what to do next for my child, there is no shame in referring us to someone who will.
  • For heaven's sake, PLEASE tell parents that they can put ice packs around the pump bag so they don't have to get up and refill the feeding pump all night long!
  • View us as part of the child's health care team, because we ARE. By the same token, please value our opinions if we have a concern about something because WE are the ones that are with our children ALL THE TIME. We know that it's hard for you to get the whole picture in the limited amount of time that you are able to spend with us, so please ask us what we think about things and listen when we try to explain what's going on with our child.
And last but not least:
We didn't choose this and it is hard to accept. The experience of having a tube-fed child is emotionally charged, to say the least. NG tubes are traumatic for everyone. Feeding pumps are a giant pain in the butt sometimes. The words "Failure To Thrive" are like a dagger to a mother's heart, so use them sparingly.

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