Crazy Day

Today was a rollercoaster. Started out great-- I was super stoked because they decided to move up Audrey's esophagram (originally scheduled for next Wednesday) since she has been doing so amazingly well!! Then I got to meet another EA/TEF mom I'd talked with before only online, and say a bittersweet good bye to my hospital room mate who finally got to take home her preemie after a month. We were called down early for the esophagram, and unfortunately that's where the rollercoaster took a major dip. The original intention of the esophagram was to verify she had no leaks and approve her for starting formula again instead of intravenous nutrition. Even though we've done this type of test many times before at home, this study was an unusually torturous ordeal for Audrey; they held her arms and legs firmly and had to give her a nasal tube to get the contrast in, which was absolutely terrifying for her and then we learned that she has two problems: a minor leak at her surgical site and major reflux..... both very bad news I was not expecting. Fortunately, the leak is very minor and should respond well to strong antibiotics (and just means we have to deal with another week or two of TPN intravenous nutrition instead of formula, difficult for her because she wants to crawl and has a major leash to contend with), but as for the reflux, I have no idea. They put some contrast in her G tube last week, and I watched as within moments it popped halfway up her esophagus.  It means a lot of important things for EA kids-- perhaps most relevant for Audrey, it can be a major culprit in the restricturing process-- the action of that fluid coming up into the throat can cause the formation of the brittle scar tissue we've battled so much and tighten down the throat within a matter of days to a tiny opening or none at all.  Justin and I are both very averse to getting a Nissen fundoplication (stomach wrap to prevent backflow) for her, since so many people we know have had big problems with theirs.  Her reflux has not ever been an issue, not even irritation from acid in the esophagus, although she's always been on medication for it since birth because they have always assumed she has it.  But it was never tested before today, and suddenly I felt trapped into a surgery that has scared us ever since we first learned about it over a year ago. I don't know what to think, whether this could be a new condition because of the recent surgery, and might get better on its own as the tissue relaxes and regains a more natural shape, or if it has always been there but just was blocked by her stricture.  Today is also the birthday of one of my sons, my cute 7-now-8 year old, and it was tough being apart for that even though we celebrated before I left.  The day ended on a positive though, when I inherited my roomie's window bedspace and ran into friends from the family house in the cafeteria, and Audrey giggled a ton while playing with me at bedtime.