Yep, that would be me. :) I broke Raya's GJ tube. Remember how in my last post I mentioned a paranoia about her feeding tube or extension tubes getting caught on something? Well that's exactly what happened. I took her to her 18 month well check this morning, which is always fun. (ha ha) The MA weighed & measured her and then she was just running around in her diaper waiting for the doctor to come in. I usually tuck in her extension tubes so they're not just dangling but she didn't have clothes on to tuck them into. I reached out and picked her up and the extension tube that was hooked to the G port got caught on my chair. The tape ripped off of her stomach and the entire G port just popped out of the GJ tube and fell on the floor with the extension tube still attached. I sat there stunned for a second trying to figure out what had just happened and then picked up the port & extension tube, wiped off the port, and shoved it back in to stop the flow of stomach contents that was soaking her shirt & shorts. About half a second later, the pediatrician walked in the door with a big smile on her face and asked us how we were doing. I laughed and said, "Fabulous." and showed her the tube.
This is what a GJ tube is supposed to look like:
See that part in the picture above that says "gastric port" on it? The whole thing came out. This is what it looked like after it broke:
The tube was pretty worn out anyway. The extension tubes had to stay on all the time or else the ports would leak. And notice the grungy yellowish color. Yeah, gross.
Anyway, her 18 month check-up went pretty well. As usual, I filled her in on the things she hasn't already been given reports on from Raya's other doctors. She had heard about most everything except for the recent issues with Raya being bowlegged. Since the PT seems to be helping that though, we're not going to see a specialist about it. We will be adding a cardiologist to the mix soon though. Raya has had a heart murmur since birth but the pediatrician never could hear it at her previous check ups. (probably because of all the screaming and puking) Today, Raya was on her very best behavior though, and even smiled at the doctor while she was listening to her heart. Since Raya was still & quiet, she said she could hear the murmur so she had to refer us to cardio to get it checked out even though she said it sounds like an innocent murmur. I figure, what the heck, what's one more appointment. :) She's made a little bit of a drop on her growth curve since her last visit too so we're just keeping an eye on things. She's still around the 50th percentile so it's not like she's wasting away or anything. :)
So after that visit, I had taped her GJ tube together to keep the port from coming out & leaking stomach fluid everywhere but I knew that wouldn't last very long. We still hadn't gotten a phone call from the PCH scheduling department about changing her tube and it had suddenly become much more urgent so I decided to pop next door and show the GI nurse. She laughed about it a little and said she'd get the order sent over. The good thing was that it was the G port, which we can live without, so if they couldn't get us in today we could still feed her while we waited.
She came home and went to bed for a while. I wanted to just let her be but there were no extension tubes hooked up to the GJ tube so I had to get her up. Here's the new tube, which is the wrong size and upside down, by the way, and the piggy they gave her:
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