Skip to main content

A little update

I had a little chat with the nurse on Friday afternoon. I figured that there was probably still something going on even though they hadn't filled me in on it yet so I left her a message. I also needed to ask her how long we're supposed to continue with the ulcer medication. A couple hours later I called back & left her a new voice mail: "I'm calling to withdraw my question about the carafate, there's blood coming out of her G tube again/still. Call me." She called me back a few minutes later. :)
She said that the doctor doesn't see any good reason why the radiologist couldn't get the GJ tube in. She knew there was a possibility that she may get a GJ in the future when she & the surgeon placed the G tube, so I can't imagine that they would have put it in a location that would make a GJ impossible to put in. Hopefully we'll have answers and an action plan for that in the next week. We need NEED to do something different with this kid because I've had just about enough of her throwing up. If you think about the last time your child had the flu and vomited his/her little guts out and there was nothing you could do but rub their back, clean up the puddle & change their yucky clothes afterward, that's what we do 3 times a day here. Sometimes everything in her stomach just comes flying out and then she's done & happy and goes back to whatever she was doing. Other times, she starts to cry because she doesn't feel good, then she screams & cries the whole time she's throwing up and then feels better a few mintes later. The worst ones are when she throws up until her stomach is empty and then just keeps going. Her entire head will turn bright red, strange noises come out of her and she can't move or breathe until her stomach relaxes. Sometimes that goes on for several minutes at a time. So when I say that I'm tired of her throwing up, only part of that is because of the loads upon loads of laundry it generates.
Anyway, I also talked to the nurse about Raya going to Ohio for testing. Raya's doctor talked to a doctor at the children's hospital in Columbus and he wants to evaluate Raya. They study motility disorders there and are able to do highly specialized testing that the hospitals here aren't equipped for. He also agrees that Raya would benefit from a GJ tube.
Before we can go, they need to see her complete medical records including films from all the scans she's had done. Then there's the issue of clearing everything with the insurance company...SO it might still be a while before we go, if we go, but it at least makes me feel like we're doing something.
So that's it for now. :)

Comments

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 …