Another X-ray

So, today we've taken a step backwards. :(

Recap If you've missed it (scroll down, if not), Emma's been having serious troubles eating and drinking enough. To the point that she was dehydrated, losing weight, and unable to really focus on anything other than wanting to eat (& was very distraught). She has an appetite and is hungry, but her stomach fills up, like a cup being topped off, and she can't add more to it even though she desperately wants to. She's been feeling like she's a mix of full but starving.

The last couple days, since they dilated her pylorus (the part that connects the stomach to the intestines), they've been hopeful she can finally eat more. They took her off the IV and have her on a liquid diet right now to make it as easy as possible for her. They've also given her daily goals. They started small and are adding to it daily.

U P D A T E Yesterday Emma failed to hit her intake goal. It was a very small amount, and so today GI came in, and he discussed a feeding tube. He wants to start with an NG tube (tube through nose and the end lands in the stomach), then if the NG tube just fills up her stomach too fast, they'll make it an NJ tube (which means they push past the stomach and put it directly into the intestines). He went ahead and ordered another x-ray, just to verify she isn't constipated because she said she is, and he was under the impression she was totally cleaned out. So, he left, thinking we'll do a feeding tube tomorrow. Then she had her x-ray.

Hem/onc came in later and said that the x-ray came back showing she is still constipated. <insert expletives> She has been constipated since mid-October. I cannot tell you how many laxatives this girl has been given in the last 2.5 months (last hospital stay included) and how many times she was expected to be cleaned out. After all they've given her, they have also been giving her a thing of miralax in the morning and senna in the evening, every day, since then, just for maintenance, to keep her from getting constipated again.

The doctor says they think her intestines aren't responding properly or moving things along as expected. She isn't showing any signs of impaction or anything like that. Meaning, we need to see what the biopsy results are to, hopefully, try to figure out why it's happening. GI doc said if it's an allergy, it'll show that. Or it could be GvHD (new bone marrow attacking her gut) or other reasons I don't know. He started her on erythromycin to try to stimulate things.

Now, with the x-ray results, and because I have no experience with GI stuff like this, I'm not sure if he'll still want to do the NG/NJ tube since it's not like the intestines are moving things along either? (Or would they likely still do it? We haven't seen the GI dr since the x-ray to know what he's thinking.) It's really frustrating, though. I feel so bad for her. What a tough little body to be in, with it regularly going through such big, difficult things.

Today she's doing worse than yesterday with her intake and output. But hopefully by the end of the night, she'll have at least matched what she's done the two previous days.

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Some of you mentioned having troubles with the comment section at the bottom of the page here. I thiiiink I've gotten it figured out so you don't have to sign up for it. Also, a lot of you have figured this out already, but in case it helps anyone else, replying to the notification emails will also work at sending us a message. Thanks to everyone that has reached out! <3

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