Missed it Again

The scan didn’t show anything and Evie’s hemoglobin is the same as it was this morning, so she stopped bleeding last night or early this morning.

Waking up after her scan
Waking up after her scan

We’ve been brainstorming with the GI doctors to come up with some other ways to locate the damage. Two ideas we’ve got right now are:

1) A camera pill. This is exactly what it sounds like. A tiny camera that is put through the GI tract to take pictures. Evie is on the tiny side of the parameters, though, so we would first do a dummy pill. This is basically a sugar pill that is the same size that we place in her intestines via scope and see if travels all the way through. If it gets stuck at any point, it will just dissolve in 24-36 hours. The real camera would have to be surgically extracted if it gets stuck so the dummy pill is worth the extra time. This had to be specially ordered and won’t be here until Monday at the earliest.

2) We’ve always been limited on how far we could get into her small intestines from the top by the length of the scope. Traveling down the esophagus takes up a lot of that length, so that we can only get 5-6 inches into her intestines. We may want to try dilating her gtube stoma to make it big enough to fit a scope through so that we can use more of the length to go a bit further into her intestines. Based on symptoms in the past and the fact that the blood is black and not red, we’re pretty sure that the damage is fairly high up so it’s possible just that little bit of extra length could allow us to see the damaged area.

She’s getting another blood transfusion right now and then we’ll move her to TPN which is IV nutrition. We want to just rest her gut and also have her stomach empty in case things would get worse suddenly.

Thank you for the continued prayers. We’re trying to stay optimistic that we’ll fix this before it does major damage, but we’re pretty beaten down at this point.


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