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Thanks!! Well it's been over 2 weeks. The 2 times test results were this late were with his trisomy 21 test (they lost the sample) & a stool test (never ran the lab) so we shall see....

Hi! Just posting an update! My son had 2 hernias repaired. Recovered well! They put in patency capsule, were told if we didn't see it pass in 24 hrs to get x-ray so we would know where it was (cleared small bowel yet) because after that amount of time they dissolve quickly. No poop at all in 24...

Yes I can ask to see the device and how it hooks up. I think he would not be happy but he would finally conceive if I was steen about it. And with constant monitoring I don't see it being an issue about getting broken. I think they want to wait 24 hours after the pill cam goes in before doing...

Um...no. When the day comes it's going to be a long stretch of constant monitoring. The plan is already changing. I think they need some time before he can have oral contrast...but I'm trying to get clarification because some of our messages are getting confusing. Stay tuned!

Thank you so much!! So the one thing I started getting curious about is how long they would have to wait between inserting the pill cam and administering oral contrast.... Providing we get to that point which I hope we do!

We have a plan!! I asked about the dummy pill cam...she said they can do that! So mid Nov he will have hernia surgery ..gonna get a lot of labs run while he is in the OR...and she will do an EGD, any biopsies, possibly the aspiration for SIBO, insert the dummy pill cam. Then, providing that...

Okay so sibo testing is... Biopsy from an EGD? Those are actually two really good ideas that I'm going to bring up on Monday thank you so much

No no he can't swllow pills, but if they have dummy cams they could probably put one in during hernia surgery. So how does the dummy cam work? It works its way through the digestive system but on the slim chance that it gets stuck somewhere it will eventually just dissolve?

I'm going to ask about the dummy cam...

No not Boston. Our home hospital in Rochester NY. I called radiology to ask some questions and was told by the radiologist that no we generally wouldn't do an NG tube unless the child was already inpatient. I did discuss it with his doctor and it sounded like we were going to shoot for it except...

He was put back on the omeprazole for the duodenitis...he had only been off it for a few weeks prior. Oh, so where I was going with the how fast can an ulcer form. Bicarbonate is produced in the pancreas right? So if his bicarbonate was critically low that means he wasn't producing any at the...

Yes. That's why the test never moved forward. We couldn't come to agreement on doing Ng tube...they didn't want to...I asked if we didn't, and he drank zero oral contrast would we still get any results to confirm or rule out chrons and I was told probably not. So I asked, then why are we doing...

I'm not positive if he was on Omeprazole at the time of his calprotectin lab... it's possible as he has been on and off it a bunch. how fast can an ulcer form? I'm curious because the day before it was detected he was fasting and cleaning out for a colonoscopy / EGD and that created a lot of...

Gotcha. Sigh. Well. We shall see what his Dr says Mon. I guess I was hoping that an MRI would at least have very detailed imaging of soft tissue and sedated there would be no artifacting and maybe there would be enough to make a diagnosis one way or another versus this constant limbo. :/

But do you know if an IV contrast enhanced MRI (but no oral contrast) would show anything

We used YouTube for an ultrasound he had but that was with me hugging him (kidney scan, they did from behind) and he still was freaking out... just the things that work with most kids just don't with him.

A movie won't get him to be still in a ct or MRI machine- he's too afraid. Just flat out panic mode

He will drink milk but then he can't be sedated

When I spoke to someone at chop I was told they would first do a regular ultrasound at the end of the small bowel and then if they saw something they would do a contrast enhanced ultrasound... But I got the impression that it doesn't get a good image of the entire small bowel. I guess there's no...

No. we have not made any headway. it's been very frustrating hence my absence. in the meantime he still has a LOT of mucus in his stool, periodic vomiting, signs of abdominal discomfort, neck pressing. Part of me doesn't want to push not knowing for sure that we're going to find something. I did...