Skip to main content

What the heck, we're already here so let's just stay until Tuesday

Long story short, we got a horrible roommate (very cute girl but she's on isolation, which I'm SOOOOOOO ticked about since my kid is healthy), I complained about the tech taking Isolation Girl's temperature without putting on a gown & gloves, I complained about having Isolation Girl in the room with my otherwise healthy child, the GI doctor came for a visit & after discussing the less-than-desirable results of what we've done so far has decided we'll be here until Tuesday or Wednesday (I'm ok w/that plan because it's what she needs), and I've spent the entire morning listening to Isolation Girl's obnoxious dad argue with the nurses, doctors, and social workers about taking her home. Apparently he's mad that they can't make her lab cultures grow faster and he wants to take her home to wait for the results instead of letting her stay here on IV fluids. I was all for them going home if it meant that I wouldn't have to listen to Isolation Girl's mommy suck snot down her throat all day & night or her dad argue in broken English about what she does & doesn't have. And my baby smells like a skunk now because we're draining the fluid out of her stomach every 3 hours so she won't throw it up. I'd rather have her smell like formula puke. And her well-intentioned nurse is running a test for c. diff (an infection that causes diarrhea & is most common after antibiotics, which Raya hasn't had) because her poopy diaper smelled funny today so she's on isolation until the test results come back, which means she has no way of getting away from Isolation Girl and her family. I asked to either have her moved or have Raya moved because the last thing my vomiting child needs is to get an actual virus that would make her vomit more.
For everybody who has told me what a great positive attitude I have about everything, I just wanted you to see that I'm human too and today I'm angry and I do not have a great attitude. :)


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 …