Update

Elizabeth and I left the hospital late Friday night! Her stubbornness, strength and even a bit of pouting left the doctors working to get her out of there at her deadline. She said Friday was her limit, and Friday it was.
We are both exhausted. Liz because she is still sick and recovering, and myself because ten days at the hospital is grueling. I joked with Megan that the military should use a hospital stay as training for having to stay awake for days on end. It always takes days to feel normal again after one of our longer hospital admits.
You can imagine what the house looked like when I got home. Walter's idea of keeping up with chores is different than mine, for sure! Plants died, laundry had piled up and the best thing was a lone piece of broccoli sitting in the microwave.
Still, a messy home is a small casualty considering how well Jackson and Kate were cared for during my time away. My sister is amazing and made sure they were fed well and loved on. Our moms helped too with school pick up and volleyball practice, and the kids enjoyed a day with my dad. A friend picked up the slack when I forgot about a minimum day schedule for the school and Kate called me wondering where her ride home was. For not being able to plan ahead, things actually went really well over the ten days.

I am sure many of you want to know what is going on with Liz. It is so complicated and the truth is we still need answers. We were able to leave the hospital for the weekend (she will be re-evaluated tomorrow) because her lungs are better, her pain is being managed and bleeding is better as well. Still, the puzzle is difficult to piece together and in true Elizabeth's body form, many pieces aren't fitting together. It was important to get her home though instead of sitting around waiting for results and for diagnosis'.
She had an hour of retching and nausea yesterday and I am struggling to get her to take in as much as she needs to, but for now she is doing well at home.

Here is what we do know, or at least what is being sorted out:
* The video from the capsule endoscopy will take about a week to sort through. You can imagine how tedious it must be for a doctor to go through eight hours of video from continuous snapshots of the inside of Liz's intestines, colon, etc. Those results are super important considering all the doctors are convinced it will show something they've been unable to see via colonoscopy and regular endoscopy.

* The results of Liz's colonoscopy look good. Pathology from biopsies also look good. This is both great to hear and incredibly frustrating to hear....this is why:
In order to have CDifficile, one must have inflammation of the colon. The biopsies are what prove whether there is inflammation or not.
Given that Liz does not have abnormal pathology of the colon, the GI team is saying she does not currently have CDiff, even though her symptoms are what they have always been with CDiff and her stool is positive for CDiff. GI is saying what I already have heard before, that her body has colonized CDifficile; that it is ever present in her gut at a level that is abnormal, but this latest bout is not truly an active CDiff toxin infection based on the colonoscopy results. This is BS to me. Though I can understand the reasoning and medical justification, I KNOW that she has two weeks of no symptoms and a three negative stool samples in October. Then, she started with the symptoms again and stool samples are positive for Cdifficile.
Now, the Immunology team is asking the GI team to consider that her body may not be able to create the pseudo membrane process in her colon due to all of the abnormal lab work she has had proving that she has either autoimmune disease or disorder. Meaning, she may be incapable of having abnormal colon pathology and that would throw the GI's idea out the window.
See, I told you this was confusing.
While they sort that out, we stopped the antibiotic for CDifficile and we'll see what happens.

* Her yellow skin and eye color is going away. It was a reaction to the new medication. Only less that 1% of patients get the reaction..... and we know, if it is a possibility, even less that 1%, Liz will be that %.

*Her lungs are better! Oral steroids helped and now she has a few inhaled steroids added. She also has started a treatment that induces coughing to keep her upper airway clear in an attempt to keep her from swallowing mucous that leads to infection.

* She was finally able to get her Flu shot as her lungs are better and she hasn't had a fever. She needs the Pneumonia vaccine, but labs show that her body has rejected other vaccines before, so we are waiting for a different vaccine tomorrow.

* She has many abnormal labs. the doctor is still working to understand it all and waiting for more results to come in so I will refrain from sharing everything now as it is overwhelming and actually sounds very concerning and even scary. I would rather wait until we have a firm diagnosis before sharing. We will most likely have her seen by a Genetics team and have Kate tested too. Some have asked if I am referring to Lupus or Arthritis....I am not. Liz has cell lines that are not functioning and antibodies that are attacking cells. Her NK (natural killer) cells are low and her immune system is not functioning properly because of all of these things. For that reason, we are pulling her from school, at least through the flu season.

I hate blog posts that are negative and seem impersonal, but many have asked for facts, and so here you have it.
For all who are wondering and praying, please know how much your support means to me during this time. I am grateful for you. Truly.