Skip to main content

The thing about bile

I earned another mother-of-the-year award this weekend. I hate when I do dumb stuff, or in this case, don't do something I should have done right when I should have done it.
Sunday afternoon we were watching General Conference and we thought Raya was taking a nap. Donny went in our room and could smell the formula as soon as he walked in the door, which of course meant that the little stinkerpot had pulled everything apart in her feeding pump backpack and had taken the tape off of the J tube extension tube (where she gets fed through) and opened the medicine port. When the med port gets opened, the formula goes out the med port and whatever is in her small intestine is also free to come out and go all over the place. Most of her right leg was saturated and a little bit on her left leg, and of course her bed was a mess. I pulled her pants off and we turned off her feed & turned her loose to go play with the big kids while they watched conference. I took all the bedding out of her bed and started a load of laundry in the washer.
We had meant to put her in the bath right after her formula leakage but got sidetracked and didn't. Usually when bile leaks out of the J tube, it's a bright fluorescent yellow color and we can definitely tell it's there but we didn't see any this time or we definitely would have washed her off right away. We noticed that her leg was getting a little red spot on the back but we thought it was because she was running around in a diaper and kept sitting on different boxes & the step stools from the bathroom. After a few minutes, it started to get really bright red and we realized that her skin was being burned by the bile that had leaked on to her pajama pants. About 45 minutes after we had taken her pants off, this is what her right leg looked like:
Feeling guilty, anyone?? She didn't seem to care but I felt terrible. I put her in the bath and carefully washed her legs but the red spots were so hot when I got her out of the tub and dried her off that I didn't want to make it worse by putting anything on it. It stayed pretty bright red most of the day yesterday but today it looks a LOT better:
It's a little more red than it looks in the picture but a HUGE improvement from yesterday. If anybody knows how to keep a 1 year old from being able to take the tape off the medicine port, I'm open to suggestion. I've seen a little device that you can hook to the extension tube to keep the kid from unplugging their feed but I've never seen anything to keep the med port closed. We wrap it with tape and I don't know how in the world she finds the end of the tape and peels it off, but she does. We have to still be able to access the port to give her meds but the rest of the time, we need her to leave it alone!

In other news, Raya has apparently had enough of me trying to get her to bite things and letting me put food in her mouth. She let me know today that she's not interested anymore. She's not gagging but she's clamping her mouth shut and turning her head again. It probably didn't help that I had to dig a lump of soggy paper out of the roof of her mouth again either. One step forward and two steps back, I guess. We'll back off again until she decides she's ready.


  1. Ouch and I can say ouch lol because I have a jtube and it leaks bile 24 hrs a day and it's so painful -I hope your little one is feeling better from one jtube to another


Post a Comment

All comments will require approval from blog owner prior to being published.

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 …