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Revisiting EES

Yesterday, Dr. M (the on-call GI dr) said that if Raya's G tube output stayed below 200 and if she continued to gain weight today, he could be persuaded to send her home. She must really really like it here. Her G tube output was 218 and her weight dropped from 9.465 to 9.40, which is a loss of about 2oz. The "external digestion" we're doing with her now has also made her more likely to get diaper rash because of the increased acidity so we're slathering on the Aquaphor. It's good stuff. :)
The new thing we're adding to the regimen today is Erythromycin Ethyl Succinate (EES). It is an antibiotic that in low doses can increase gastric motility. In other words, it's supposed to make her stomach drain faster. She was on EES for about 6 weeks this summer and although it never decreased the frequency of her vomiting, it did decrease the amount that she was throwing up for part of the time she was taking it. This time around, the hope is that if we can encourage more of the stomach acid to move through her digestive tract, we will be draining less of it from her G tube and there wouldn't be as much concern about her getting dehydrated or being able to maintain her weight gain.
So she's not going home yet but on the bright side, now I'll get to watch the 1 hour Sister Wives special with Natalie Morales tonight and I can keep enjoying the delicious $1.30 waffles from the cafeteria. As a sidenote, I don't think I'll ever get used to seeing people eat refried beans for breakfast.


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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…

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…

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 …