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What we're doing about it

I just got a phone call from Nurse R. She said that Dr. Y (the radiologist) sent his report over and said that there was some possible thickening of the folds of the duodenum near the pylorus (i.e. small intestine where it connects to the stomach) that could be caused by an ulcer. (can't imagine why she'd have an ulcer with 500ml of excess bile coming out of her every day...) It's possible that there was already something there and having the GJ tube changed aggravated/inflamed it. She's going to need to start taking carafate (an ulcer med) every 6 hours on an empty stomach. Conveniently, we just happen to have a bottle of that from last fall when she was bleeding from her stomach. This time it will be a lot easier to give it to her on an empty stomach than it was before since she's not on 22 hour/day gastric feeds. :) Now I just have to decide what time I want to get up in the middle of the night to give it to her. :)
In addition to the carafate, Dr. S. wants to see Raya on Monday and wants to do an EGD (esophagogastroduodenoscopy, my favorite GI-related big fancy medical word :) next week. The upper GI showed that there is a problem but it doesn't show detail like they're able to see in an endoscopy. I might beg them to give her a little versed before she wakes up from the anesthesia so she won't be like a little wild animal this time. She was pretty crazy last time. (see here)
I jinxed myself about 10 minutes before the nurse called by looking at the calendar and thinking to myself, "Wow, we only have 3 appointments on the calendar next week!" Why do I keep doing that?!? :) It's okay though, I don't mind. Now I feel funny if we DON'T have 3 or 4 appointments in a week and I completely lose track of what day it is if we don't have the regular appointments. :)


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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 …