Upper GI

The Upper GI was tough yesterday. The day was absolutely exhausting. Lucy was a real big girl though and I was so proud of her. She did everything they asked her and was super patient when they stretched her out on the table and flipped her like a pancake every two seconds for ten minutes. Despite being offered whatever expensive prize she could find, it only cost us one coloring book from the gift shop and a Color Wonder activity pack from the toy store. She did great! She was such a good girl!

Unfortunately the test itself did not give us good news.

Things started off looking perfect. The radiologist remarked that she thought her stomach looked great and was emptying on time. Other than a couple episodes of reflux she didn't note anything unusual. I wasn't surprised she saw the reflux, we've seen a huge rise in it since starting the formula trials, but I was shocked that her stomach was okay. I thought, "Here comes another test that gives us no answers, stresses my baby out, and costs us a fortune."

But as the morning wore on the x-rays to check on the progress of the barium became farther between. Lucy got more and more tired and paler and paler having not had formula or water for so many hours. She didn't even urinate from the time she woke up that morning until well into the evening after we had gotten home. The test was SO exhausting for her.

Finally after an x-ray at about 1:30, the nurse told us to sit in the waiting room because the doctor wanted to speak with us. At the beginning of the test the doctor told us that she wouldn't talk to us again unless there was a problem so we knew something was wrong.

She came out and told us the Lucy's small bowel was barely moving at all. That once the barium had moved into the small bowel it began to completely crawl. Her small bowel was barely functioning and the barium was barely moving. If she were to keep us until it reached the end we could be there all darn day. She was kind enough to page our GI, who apparently knew we were there already and made sure to actually answer the phone. He told her we could stop the test, we knew what we needed to know.

This is significant information. This is the first time a test has been done and told us something we could really use in her treatment. I am deeply deeply concerned however, because whenever there is a malfunction further down the GI tract it gets harder and harder to arrange for proper nutrition. If you remember, a GJ tube has been on the table as a big possibility in the future so that we can increase the rate at which we feed Lucy and get her to grow. The GJ tube feeds the small bowel....this test may have indicated that would be a pointless procedure for her since the small bowel isn't working.

The radiologist gave us the gist of the results, but really couldn't tell us what kind of impact this would have on her treatment, other than stating she wasn't recommending a GJ tube at this point.

Of course, it was a Friday and I did not get to speak to our GI to discover a plan of action at this point. So, we have all this bad news to stew on for the entire weekend before we can actually discuss where on earth we will go from here. Talk about emotionally draining!! If I had been alone for 10 seconds at any point yesterday I would probably have had a complete breakdown from the pressure.

However, instead, I spent what was left of the day snuggling with Lu, shopping for her "prize", and later met up with one of my oldest friends to snarf down a 20 piece box of nuggets. That's therapy.

My plan for next week is to continue to keep a close eye on Lucy's Vivonex trial, aggressively try to get in touch with her GI, and get another weight check to see where we stand nutritionally.

As always, thank you for checking in on Lucy!