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Monday, May 16, 2011

You BROKE your kid's GJ tube?? Who DOES that?!?

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.
After that we went home and waited. They called at 12:35 and told me to be there by 2:00, so I had to hurry and load the girls in the car, pick the 2 big kids up from school since I wouldn't be home in time to pick them up after school was out, and take them to their cousins' house. We pulled into the parking garage at 1:59. It was the first time we had been to the actual hospital since they opened up part of the huge new addition and it is SO nice! I got to park on the first floor of the parking garage instead of the 3rd floor. (the first 2 floors of the old garage are reserved for physicians) We were all checked in by 2:15 and then we had to go back to the other end of the old part of the hospital to wait for the procedure. By then the port wasn't really staying in very well anymore so her shirt was soaked and did I bring a clean one? Of course not. :)
They finally came & got her about an hour later. She was NOT a happy camper when I handed her over to the nurse! It only took them about 10 minutes to change it this time and no sedatives were required. :) I could hear her coming down the hall when the nurse brought her back out and she was clutching the little beanie baby piggie they gave her. (that kid has a HUGE collection of hospital pity stuffed animals! :) I think this was the shortest visit we've ever had there. Now she has a sparkly new tube. I feel like it should make that little "ting!" sound like the white teeth on the Orbit gum commercial. I didn't realize how cruddy the old one had gotten until I saw the new one. :)
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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