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EGD/endoscopy results

What a long friggin' day. This morning, I woke up and realized that the extension tube on Raya's gastric port was clogged so her stomach hadn't been drained the whole night. I thought for sure she'd be puking any second but she never did. She was acting funny though, like she was really high-strung and couldn't relax. I decided to put her in the shower, which she normally loves, but as soon as I put her in, she freaked out and was screaming and trying to get out (and no, the water wasn't too hot). It was very strange. After the shower, I changed the tubes and instantly she started draining bile. After a few minutes of draining, she was back to her normal happy self. That little experience just once again shows that there is a very strong correlation between Raya's GI symptoms and her sensory issues.
We left the house at 10:30 this morning (we being me and the 4 kids) to take Raya to OT. Halfway through OT, the bile drainage bag decided to spring a huge leak so bile went everywhere. I couldn't figure out where it was coming from though. Once OT was over, I took the 3 big kids to their cousins' house to go swimming & play until Raya & I got back.
When we got to the hospital, Raya looked like this:
I waited until I only had 2 minutes before we were supposed to check in to get her out because I knew as soon as I opened the car door, naptime was over. It was about then that I realized I had forgotten to bring a stroller, so we were hoofing it. Wouldn't have been so bad except that the new admitting area is about as far as it possibly could be from pre-op/endoscopy. Then halfway through the parking garage, the stupid bile bag started leaking again so I had to unplug it and clamp the tube. We checked in and the real fun began. :) How do you entertain an 18 month old for 2 hours? (perhaps the real question should be why the heck they make you check in 2 hours early):

Take pictures of yourselves so you can show them to her
on the little screen on the camera.

Pretend the hospital pager is a cell phone and then steal Mommy's phone out of her pocket so you can talk on both at the same time. Then run around admitting trying to steal other people's hospital pagers, car keys, etc.

Find a paperclip on the floor and try to poke it into the little holes on the pager.

Play Alvin & the Chipmunks and Mario on the DS, which is apparently not nearly as fun for an 18 month old as it is for a 6 year old.

Wear a barf bag on your head. Don't worry, it's never been puked in.

Plug syringes into your extension tube ports.

After Mommy finally flags somebody down to see if they're ever going to come out and get us and then finds out that even though Admitting knew we were coming, Pre-op had no idea we were there, you get weighed & measured and put on hospital clothes. Then clean your face with half a package of wipeys while the nurse asks Mommy the same 20 questions multiple times.
 It was not our best outpatient procedure experience. Now that they moved Admitting to the new building, they check you in and then send you to the opposite end of the hospital to sit in a little waiting area. That would be fine except that the doors to pre-op & radiology/echo/cath lab are all secured doors and there's no phones to call in and let anybody know you're waiting. After we had been there for an hour, somebody finally came out of the door and I asked her to go in and see if anybody was going to come for us. It turned out that since we got added to the schedule yesterday, Pre-op had no idea we were there. If I'd had the energy to be mad about it, I would have. By then I was worn out from 90 long minutes of trying to keep Raya out of trouble. Blech.
Anyway, they finally got us in and prepped for the procedure and the doctor came in to talk for a few minutes and then I walked her in to the room and held her for a minute while the anesthesiologist got ready for her. The nurse untied the hospital gown so the knot wouldn't dig into her back and Raya took that as a cue to rip it off and throw it on the floor. :) Poor kid thinks anytime she's in a medical facility she's supposed to take her clothes off. :) I put her down on the bed & the nurse covered her up with a warm blanket and the anesthesiologist put the mask on her and that's when I left. It was a little creepy. They don't usually even have me come in the room so it was a little strange that they did this time, let alone have me stay in there until he was ready to knock her out.
So without further ado, everything looked normal. Go friggin' figure. I have now used the word "friggin'" twice in one post. That should be a clue as to how I feel about it. Friggin' friggin' friggin'. I shouldn't be surprised that there's nothing abnormal in there. There's NEVER anything abnormal and I'm getting SO sick of things looking normal when there's obviously a problem. Dr. S said that all her tissue looks healthy and there were no obstructions and there's plenty of space where her tube goes through the pylorus into the small intestine. She didn't see any inflammation either. She said that the only slightly abnormal thing she saw was that the ampulla (the duct where bile enters the duodenum portion of the small intestine) is closer to her stomach than normal. She said that usually the ampulla is farther away from the stomach than Raya's is and that the tube was resting against the side of the ampulla. That might be insignificant but it's the only thing out of the ordinary that she saw. So once again, I feel like we're beating our heads against the same old brick wall. It's obvious that something was going on in her little body but even going in with a scope didn't turn up anything. Dr. S did take biopsies though and she had them do labs while Raya was under so they can check her pancreatic enzymes and make sure that losing all of those fluids for the last 3 weeks hasn't thrown off her body chemistry (electrolytes, etc.). If all of that comes back normal too I might have to kick something. (But not with my right foot because Raya chucked a can of El Pato sauce at it when we were at the grocery store yesterday and the edge of the can landed right on the joint where my big toe hooks to my foot and it really REALLY hurts.)
So after all of that, she once again woke up from anesthesia screaming and freaking out and trying to rip the IV out of her hand. I did get a good laugh when the male nurse came to the waiting room to take me back to recovery though. He told me that Raya was upset and that she was probably just hungry. I tried not to laugh out loud when I told him that she has no idea what "hungry" even is since she hasn't eaten orally in over a year and gets all her feeds through the J tube. :) I took my little angry animal back across the entire friggin' hospital and back to the parking garage feeling exhausted, dejected, almost in tears and somewhat wondering why we even do tests on her anymore because they always turn up NOTHING. Then I reminded myself that ruling things out is just as important as diagnosing things, it's just way more annoying. See, doesn't Raya look annoyed?
On the bright side (albeit annoying as well), her G tube drainage slowed down drastically today for no apparent reason. Hopefully the endoscopy shifted the tube enough to stop irritating whatever it was irritating and the drainage will just go back to normal now. I guess that would make the whole unpleasant experience worth it.


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