Skip to main content

Holding steady

It's still hard to say if Raya's stomach weirdness this week is the result of an extremely mild and virtually undetectable virus or a sudden drastic decrease in her motility, but today has been a pretty good day. I chatted with the GI nurse yesterday in the late afternoon and she told me they've had several of their motility/GI kids' parents call with similar issues, but she said most or all of them had a low grade fever at some point and/or diarrhea along with the vomiting and Raya has not had either of those things, so I'm still not completely convinced that it's viral. However, there's also the dreaded possibility that a mild stomach bug has thrown her motility completely out of whack even though there is no longer any sign of a virus. (aka the complication we've always worried about) It really should be a law that all viruses should have to come with a fever so that parents like me would know whether their kid is sick or just having more GI problems.

She's had a good day other than being a little more tired than usual. I am attributing that to the fact that she has gotten just a fraction of her normal caloric intake all week since we've had to run pedialyte and diluted formula at slower than usual rates to keep her comfortable. I sent her to school without her pump on this morning because her stomach was still full of formula from her overnight feed, and because she was supposed to have feeding therapy after school. Her feeding therapist canceled last minute because of a migraine, but I figure that was probably for the best since Raya wasn't too interested in eating anyway. Sensory-wise, she's been a little out of whack this week and was not a fan of getting her massage & joint compressions at OT. You can almost always tell that something is off with Raya's GI tract by the changes in her speech. It's the strangest thing but it's absolutely connected. She gets harder to understand when her gut is acting up.

I accidentally made her puke today. I was trying to check for residuals to see if her stomach was still full of formula after school and the tube was blocked by potato chip goo. Usually if there's a little blockage like that, it doesn't bother her in the least bit for me to push & pull a little bit with a syringe to clear whatever is blocking the tube. Apparently her stomach is extra sensitive right now though because she started dry heaving. Then she kept dry heaving for a good solid 2 minutes but nothing came out so I'm guessing the formula had cleared her stomach by then. Lesson learned: don't try to clear potato chip goo or other food goo from the tube with a syringe when she's having a bad motility week.

I got a good chuckle out of her this morning. We were ready to leave for school and I heard her talking. I looked over the back of the couch and saw that she had tucked in some of her stuffed animals and was giving them instructions for while she was gone to school and saying goodbye to them. Stinkin' adorable.
Then I couldn't help but laugh and sigh at the fact that the majority of her stuffed animals have come from the hospital. The big lamb on the left (aka Momma Lamby) is one that she stole from a sibling. The raccoon came from her awful impedance probe overnight hospital stay in May. The small lamb is from an emergency endoscopy and first attempt at GJ tube placement, and the ugly parrot thing on the right is from her pH probe when she was 7 months old. Normally she has more than 4 with her at a time so I'm surprised there were only 4.

Hopefully she'll start to get some energy back when she's back on full strength formula tomorrow. Today she's been on 2/3 formula and 1/3 pedialyte with additional fluids as usual, and she's been at a continuous rate of 75ml/hour. I might cry if we can't get her back on 2 or 3 hour bolus feeds in the next few days. Having her go from tolerating a whole 8 oz feed in 30 minutes to not tolerating anything faster than 8 oz in 2 hours last fall was a painful setback. If what we're dealing with this week ends up being a motility problem rather than a temporary illness and we're stuck at 75 or 80ml/hour, that's pretty much going back to where we were about 2 1/2 years ago. Ouch. Fingers crossed that things will get back to normal (whatever that means...) very soon!


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 …