Skip to main content

Garbage disposals are disgusting

I was cleaning the kitchen today (shocking, yes) and thanks to its small size, which made it hard to see, a little bitty syringe met a tragic death in the garbage disposal:
The real tragedy was that I then had to reach into the garbage disposal, which I'm pretty sure is one of the most vile and creepy places on earth, to get all of the little tiny pieces of the syringe out of the disposal. After fishing around for a minute, I thought I had gotten all of it so I turned the disposal back on and more pieces came flying back out at me, which was much better than having to go in after them. We'll be more careful with the little tiny syringes from now on. :)

Then another gross thing happened. I was sitting at the table working on a sewing project that keeps getting interrupted when Raya crawled up my leg. Then I caught a whiff of the horrible smell that is her stomach contents and it was much stronger than usual. I looked down to see why and saw this:
That would be the bottle that's SUPPOSED to be attached to Raya's G tube to drain her stomach so she doesn't throw up as much and so that we can measure how much comes out of her in a day so that we know if she needs more fluids replaced. It was gross and smelly but not as gross as when she started throwing up today and simultaneously had the yellow stuff coming out her mouth, drainage tube, and from the port on her Mic-key button. Bless her little heart.

And last but not least, this is Raya's evening cocktail:
There are 6 of them right now but we'll be dropping one of them after Friday. (Do you see why I'm obsessive about writing everything down?) Here they are standing in a nice, neat row:
I have a love/hate relationship with them. I love #1 because it helps her to not gag loudly all night long but I hate that it's such a tiny microscopic dose (0.35ml, annoying). #2 helps reduce the amount that she throws up & that drains out of her stomach but it has an undesirable side effect and it's very sticky and smells like banana (don't like banana) and those nice little blue caps don't fit on it so it's hard to not make a mess with it. #3 has been delightful, I just hate that she got c. diff twice and needed it at all. #4 is heaven-sent and I love it even more because our copay for it suddenly dropped by $35. I don't mind #5 except that it can't be given within 2 hours of #4 but it smells like strawberry. #6 is a capsule that I have to dump the powder out of and mix with 5ml of water and then add it to her formula twice a day (or just put it in her J tube if/when I forget to put it in the formula) which can be a pain but it smells like yeast which reminds me of fresh baked bread. And there you have it. Hopefully soon we can cut a couple of them out of the routine.


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 …