Skip to main content

Feeding Tube Awareness Week 2018: Day 4

Support: Fired Up About NutritionThursday, February 8th
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters. 

Today's FTAW topic is Support. I consider myself incredibly blessed to have a supportive family throughout this journey. Not just my parents and siblings, but also my incredible extended family. There have also been circumstances that could only be fully understood by the friends who are fighting similar battles, and many of those friends have become like another family to me.
The things parents find themselves doing in the process of raising medically complex children do not always make sense from the outside looking in. I know there have been times (and probably still are) when those closest to us have disagreed with decisions we've made in Raya's care, and have had their own ideas about what we should have done instead, and I know that must be very difficult. I know I also have not always been the easiest to deal with, especially at the times when things were the most difficult and I was extremely stressed. I am grateful for the people who have been patient with me, and even more grateful for those who have made the effort to understand rather than to judge. Support means the world to a family like mine.


Popular Posts

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …