It's been a long day. I think Kellsey needs a time out. She is WAY over stimulated (which is weird to say since she's stuck in a bed) but she has so many new people in and out of her room, has watched WAY too much TV and has more new toys brought in than she knows what to do with. My mom is with her right now and said that she finally just threw everything off her bed onto the floor and is just done.
And for that matter, so am I. I think I need a time out, too. Maybe Kellsey and I can go sit in a corner and cry together somewhere. Kellsey had her test today with the NG Tube... it was supposed to be this morning, but was bumped to this afternoon. When we finally went down for it, the tech in the room told me the plan was something completely different from what I had previously been told. He said she would be drinking barium by mouth, which I was NOT ok with. Kellsey drinking fluids by mouth can lead to aspiration which can lead to pneumonia. Her getting pneumonia right now would not be good. He argued with me for awhile and I finally told him that she would not be drinking by mouth. Period. He went to complain to the doctor who came in and told me that all they would be doing was putting the NG tube through her nose and down into her esophagus past where the abrasion is and they'd put barium in that way. THAT is what I was told yesterday. I told her that her techs should not be telling parents things that were going to happen if they didn't know what the heck they were talking about. Right after that, the tech pulls out TAPE even though it's all over her chart and on her allergy band that she's allergic to it, and couldn't figure out what I was talking about when I said he couldn't put that on her. @@
THEN the doctor proceeded to tell me that Kellsey would be restrained for this procedure. Um, what?! She explained that ALL kids try to get out from under the machine because it scares them. I assured her that Kellsey wouldn't. She again said that Kellsey would be tied down... that's how they do it to ALL kids. I told her that was great but there is NO way they're tying down a kid who came from an orphanage where she was likely tied down to her bed. Sorry. She would lay there JUST fine. So, she rolled her eyes and said they would have the restraints on stand-by and I told her she would NOT be using them. Kellsey laid there just fine... with someone holding her head and arms still. The doctor admitted I was right. Shocker. GRR!
The good news is that the test showed no leakage, which means no hole has formed in her esophagus. However, the spot where the battery was is really narrowed and still really inflamed. Therefore, she can't begin eating by mouth tonight. On Monday, they will do an MRI and an endoscopy to get a better look at this narrowing and decide if it has to be repaired surgically or not.
In the meantime, they started tube feeds today. However, it's causing some kind of reaction with her. I have been saying for a couple months now that I think Kellsey has developed reflux, but everyone disagrees with me. What do I know? I'm just a dumb mom. Her surgeon who put in her g-tube said that since they didn't do a nissen and fundoplication that there was a chance she could develop reflux. When I saw signs of it and mentioned it, they said they were sure that wasn't it. Whatever. However, the GI doctor said that if they were to do g-tube feeds and it WERE to reflux up to the abrasion, it could make it worse and possibly even create a hole. So they started the tube feeds, she got really cranky and started pointing at her mouth and whining. My mom asked if she could be refluxing and they said no. Hmm.... I talked to the floor doctor on the phone and mentioned my concerns especially because of what the GI doctor said. He said that was fine that they could stop her tube feeds for tonight until I could talk to GI tomorrow. However, now they're all ticked off at my mom. Not her fault. I'm sure I'm being labeled a difficult parent (what else is new?!), but DANG, they're telling me one thing and then saying another! *sigh*
Anyway, I am home for the night with the kids. One more school day this week. Yay! I have been working hard the last couple days on the program for Kameron's school play, and I'm hoping to get it finished up tomorrow morning... we'll see. Please be praying for Kellsey's tests on Monday. Those will decide whether she needs to have surgery to fix her esophagus or not. I assume that her GI doctor will start her tube feeds again tomorrow, but I just want to get some reassurance from her that it's not going to cause more damage than what's already in there. I'd rather wait, leave her on IV fluids and let her heal a little more than risk making things worse than they already are... but again, what do I know? I'm just a stupid mom. Frustrating.