Studies Day #2

Guys, these motility studies are no joke. 30 hours of being stuck on her back, no rolling over or getting up, and not even being able to wear her hearing aids (she can't when lying down) was tough. She also couldn't eat or drink. It seems like her scoliosis made it worse, too (if she had continued growing taller, she would have had to have a rod in her back).

She did okay for the first 10 hours or so. Then after that, it was pretty miserable for her to not be able to move position. I adjusted her legs around instead to try to change pressure--pillows, more pillows, less pillows, etc. It seemed to help a bit. The catheters were painful for her, too. So, whenever we could, we gave Tylenol. It barely took the edge off. We were limited on meds we could give her due to the fact many mess with the gut.

She woke me up often through the night with her whimpering and crying, begging to have the catheters removed. I feel like I barely slept, trying to soothe her, but she slept much worse than I did. (FYI: In many ways, Emma is much younger than her age, while simultaneously being more wise than most anyone I've ever met. I plan to one day explain this in more detail.)

They came in at 6am for x-ray. Then the nurse came in at 7am to start the testing.

HOURS 1-3: Monitored her resting gut

HOUR 4: Gave an IV med similar to erythromycin, which stimulates the gut (only they accidentally gave an hour's worth in 30 minutes)

HOUR 5: Observed gut response to the stimulating gut meds.

HOUR 6: Had her eat food, as much as she could in 30 minutes.

HOUR 7: Observed her gut after that.

HOUR 8: Gave her an enema, through her lower catheter, and observed the response.

Then we were done!

On hour 4, when she received the med, she pretty quickly got nauseous. The nurse explained she had to stay lying down if she threw up, which made Emma feel panicky. While I was asking if she could have zofran (she couldn't), she started dry heaving, so I grabbed both of her wrists and pushed on the center of the inner side, mimicking what Sea Bands do. (Those helped her tremendously during transplant/chemo.) I felt like we were preparing for take off when the nurse suddenly appeared with an alcohol swab right under Emma's nose, which made the nausea go away! Am I the only one that hasn't heard of this?? Because I've heard of a lot of different nausea tricks over the years and hadn't heard this one. Thought it was pretty nifty. Then Emma fell asleep.

Anyway, there are a lot more details, but I'm too tired to make any sense. It was super exciting when it was over! That was an exhausting bunch of tests, and I'm not the one that went through the hard part.

Initially the plan was to have her go to IR later this afternoon to get her upper catheter removed and her GJ button replaced (with the aid of x-ray while she's awake), but after hour 7, they changed their plan. Now they'll be doing it tomorrow under sedation because they also want to go back in and look at stuff. They didn't say why yet. The GI nurse doing the studies said that some spots were abnormal. I think it was in the phase after she ate. The doctor said her large intestines look good, though. He'll look through the small bowel info and let us know tomorrow how that looks tomorrow. So, she currently still has the upper catheter in while we wait.

There's a chance we'll be able to go home tomorrow. We're really hoping so. Maybe we'll have some answers and a plan to help her. Fingers crossed it's just a med that can fix things.

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