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Hurry up, Monday!

Actually I should say, hurry up Tuesday because I'm really not looking forward to Monday. Monday is {get up early, go to airport, get frisked by TSA, beg them to let Raya & her liquids through security, and sit on airplanes with a fidgity one year old all day} day. Tuesday is when she'll be admitted to the hospital and the real fun will begin. :) Honestly, I'm starting to worry/wonder if they will be able to get all the information they need from the 2 tests they've scheduled, one of which we've pretty much already done with her before. The neurotic mom part of me wants them to do every test they have on her so they don't leave any stones unturned but I keep having to tell myself that they know what they're doing.

In the mean time, Raya couldn't be more ready to go. (me, on the other hand... :) When we came home from the last hospital stay, I wondered how long we would have before our new plan we had enacted would stop working for her. We've made adjustments here & there in the last month but when the only thing we have ever been able to accomplish is a slight reduction in her symptoms, it doesn't take too long for her stubborn little body to learn to work around our treatment plan and do what it wants to do. We've gotten used to and probably taken for granted how well she has gained weight since we started tube feeding her, but in the back of my mind I feel like we're walking a thin line of stability with her. There's always a question in my mind of how long what we're doing right now will continue to work for her before things start to go south again. She's still doing pretty well right now but I can see that her symptoms are starting to evolve a little bit again.

For a very long time now, Raya has been my little vomiting alarm clock. She's very consistent. I woke up this morning to the sound of little happy noises from her bed and no dry heaving or vomiting, and although I like it when she feels good, that's a pretty good indicator that something's wrong. Sure enough, I looked at the feeding pump and we had forgotten to reset the dose on it last night. She probably stopped getting fed around midnight or 1:00, so she had been off for about 6-7 hours. She had gone back to sleep so I just turned the pump on and left her alone. Then almost exactly an hour later, she started dry heaving again. So pretty much, she just can't handle being fed. At all. We've noticed the same thing when we give her a 2 hour break in the evening too. Almost instantly when we turn off the pump, she feels great. Her energy level spikes and she's just as happy as can be.


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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. :)
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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 …