five

We made it three weeks before she started having issues. But then she did, and now we're here again, a month after we left. Thursday evening we were told by GI to go to the ED. We arrived late and were admitted even later. Finally got to go to sleep at 5:30 yesterday morning! Now that I've slept a little bit, here's the update:

TIMELINE:

- She discharged from the hospital end of March.

- Things went great for three weeks. She was on formula & a soft food diet (her choice).

- I convinced her to add solid foods to her diet.

- After doing that for three days, she couldn't handle her feeds anymore.

- We decided to stop solid foods to see if that would fix it (she didn't want the hospital)

- She started her feeds again three days later.

- But then she stopped her feeds again...also after three days

- At that point, she seemed to go downhill and was really struggling.

So, I contacted the hem/onc, who deferred to GI. The GI doctor called me back that evening and said that Emma needed to be taken to the ED. He said that gut issues can be very complicated. Testing can show one thing, but the patient can still appear another way, proving that something more is going on. So, she got admitted, and yesterday they did a study of her small bowels. The test took about four hours, and the results came back normal.

We don't know for sure that it's her intestines, but it really, really seems like it has to be. Her feeds skip her stomach and go right into her small intestines due to the gastroparesis. She reaches a point where she can't handle feeds, seemingly when solids are introduced. Like, the combination of the two might be too much for her intestines. Or maybe not. Maybe it's something different!

So far they haven't been able to recreate the problem with their testing. Like, they always clean her out really well, and then she has to be NPO for hours before the tests, then her body only has to handle a small amount of something, in this case it was liquid contrast, which she generally can handle liquid. That's very different than having formula and some solid food, day after day, and seeing whether or not her system is able to keep up with alllllll of that.

I talked to the GI doctor that's on today. He's the one that did the motility study last time. He said there isn't a test that does what I was describing. Like, they can't add food with contrast, without cleaning her out and without making her NPO, and watching how it travels. However, he does want to try to see what happens when she eats solids. He will only be able to monitor her stomach with this test, but it might show him a bit more...somehow?

As I learn more, I'm beginning to understand why they (GI in general) don't really know how to figure out what is going on in a lot of people (a common complaint among patients). While the testing they can do is amazing, and while I'm very grateful for these types of doctors, the testing is also very limited. Those organs are used to dealing with a much heavier load, and they might struggle a lot more with the higher demands than they do with the much smaller ones used for testing. It seems like that leaves a lot of room to potentially miss a lot of stuff. But...it is what it is.

Anyway! So we're here for hospital stay #5. I really hope we can figure this out so Emma can feel normal again. And also for the other kids' sake. I talk a lot about Emma, but this is really hard on all of them. Ella couldn't stop crying and didn't want to let go when we had to leave.

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