Update 7-2-12

Writing this as Liz and I sit in the hospital lobby, waiting to go through the outpatient admit process the hospital requires for labs and the radiology dept. At this point she should be able to just walk in this joint and have our insurance info immediately register, but unfortunately we have to go through this same ridiculous process every time. On the heels of a great trip with Kate and as we are just days away from our big family trip back East, I am bummed to have started out our day this way- two hours at the Pediatrician for a disappointing appointment and now a trip to the hospital for an abdominal series (X-rays). Liz has symptoms of CDiff so we will test for that. Her doc thinks she is impacted, so we'll confirm with this KUB. Liz has also lost a little over a pound in the past three weeks which just makes us nervous that she is falling into her cycle of impaction, infection and weight loss. A serious bummer.

4:45pm-
Dr. Lee called about an hour ago to tell me what I ready knew (because I am able to read Liz's films myself at this point)- Liz is impacted. Blah. This means that she is literally full of stool and after talking to the GI doc, they have decided  that tonight Liz will do a clean-out, just as we've done before for impaction and the same as patients do prior to colonoscopies. Not fun at all. She's going back on the Floristor (probiotic) as Dr. Lee and the UCLA gastro team all feel that when she has stool just sitting in her gut, the CDiff starts to rev up. Pretty crappy.
Liz didn't have labs drawn today because the NBT (Nitroblue) test requires the blood samples to be picked up and taken to CHLA by noon. We didn't even leave Liz's appointment until 12:30. I asked to just do the test when we get back from vacation, and Dr. L said we could, but now because we found out late this afternoon that her last CBC shows low counts, Dr. L wants Liz's blood drawn before our trip. So, tomorrow she'll have labs drawn for Prealbumin, a CBC and the NBT.
Liz's white count is down to 2 ("normal" range is 4.5-13) and her neutrophil count is down to 1.1 (yikes!). Dr. Lee wants to know these counts specifically before the trip; Lulu will definitely be wearing a mask on that plane with counts like these!

So that's it. Back to the reality that this seems to be something Liz has to deal with indefinitely. We just can't escape it all, for now at least.
If you are praying and would like to specifially pray for her, I would ask that you pray for:
- Liz's weight to climb back up. Once she gets a clean out, her weight will go down even more. Dr. Tran was very direct when he said she must not lose any weight at all before her next appointment on July 24th, or else we would be forced to schedule gtube placement.
- Labs drawn tomorrow would show that her white count and neutrophils have increased. Both of these are the front-line cells for fighting infection.
- Her clean out tonight and tomorrow is not ging to be fun. Please pray for her patience and for her poor bum which is already bleeding from excessive stooling and her fissures.

A BIG thumbs down to having to spend our afternoon at the hospital.
Boo! We have places to go, people to see and things to do.

I can read her films myself by now, so I knew immediately that Dr. L was right....
Liz is, um, literally full of crap.
I wish you could see a photo of a "native abdominal cavity" next to one of Elizabeth's x-rays.
After so many surgeries and so much of moving things around and twisting things together, her gut is pretty cool looking.