Skip to main content

A little experiment

And no, I'm not referring to the experiment the kids did last week where they put a fly in a bottle of Raya's bile and left it there to see if it would get digested. (it didn't and Cole decided to shake it and spilled on the floor so it had to get thrown away because it stunk up the whole house) I digress.
Anyway, after having 4 big nasty messes this week from Raya's bile drainage bag either coming unplugged or the extension tube breaking off, we decided to try leaving her clamped overnight last night. Every time it broke or came unplugged, she was in bed either at night or for naps. I even tried leaving it clamped until 5am once but between 5 and 7 it drained a huge amount and then came unplugged and spilled on the floor again, so I gave up on that idea. (who wants to get up at 5 to plug in a bile drainage bag anyway :)
We expected to wake up this morning to her puking everywhere but she didn't. She was doing a lot more coughing and loud swallowing than normal, which sounded like reflux to me. Donny plugged in the drainage bag at 7am and within an hour, she had still managed to drain 80ml, which is actually pretty average for 8am. It kind of confirmed my theory that she doesn't drain much, if anything, until the early morning hours when she starts to move around and starts to wake up. 
With that in mind, we decided to do things backwards today and instead of draining her most of the time and only giving her a few hours off, we just drained her for 30 minutes at a time (or less) every couple of hours throughout the day. We drained for a total of 6 hrs and 45 minutes and she still managed to drain 290ml, which is almost 10 oz. A little below her recent average but still high. We've decided to keep doing this for a few days and see how it goes. If she's still going to have the same amount of drainage this way and if it doesn't make her uncomfortable or make her throw up, we would all rather have her only be hooked to the bag for 6 hours a day instead of 20. On the side of caution, I will still be covering the floor around the crib with towels tonight but maybe she'll surprise me and keep doing well with this. Hopefully this is a preview of how she'll handle things when we switch from the GJ back to the G tube next week. Fingers crossed for tonight. :)


Popular Posts

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 …