Update

You would think a person who is stuck in the hospital room all day (and wide awake for most of the night) would have plenty of time to journal a blog entry. That is not the case, though. The hours pass quickly and Liz's needs as well as the constant visits from doctors (she has so many now that it seems as though there is a visit each hour) leave no time.

It feels like too big a task to update all that has been going on over the past couple days. I cannot find words to put it into the right form, so I will simply list what I can. There are a few things, including a specific immune-based disease, that are possible diagnosis for Liz. I have decided to keep quiet about those unknowns until there is a reason to talk about them. At some point and with certain possibilities, it is just too much to talk or worry about unless we have to. I cannot worry about the "possibles or even the "partially positives" anymore. I will drive myself crazy if I do.
*The meeting was good. Walter was able to be present as well and the two of as sat around the huge boardroom table with a room-full of physicians. There was a lot of ego in that room, let me tell you! Ego aside, they treated us with much respect and I was proud of myself (Walt said he was, too and I even got a nod of approval at one time from the biggest Ego there) as I debated, challenged and followed throughout the whole meeting. If I am going to be in this situation, I better do my best, right? And doing my best means not backing down and finding my backbone....even in a room of doctors.
I did fight tears at one point as I sat listening to them all and it struck me that all of the talk, all of the percentages and numbers and counts, all of the acronyms and finger waving and raised voices.....all of it was about Elizabeth. They were all talking about my daughter. It was an in-my-face reminder of how serious this has become.

Walter was a bit discouraged after the meeting, but I was not. He lives this with us, yes, but as he works, I am the one who knows all there is to about Elizabeth and I understand how intimidating and scary the meeting was for him.
I left firmly believing the following... these doctors, whether from truly caring about Elizabeth or from intrigue alone, are invested in her case. I know enough to understand that "rare" and "complex" and "uncharted territory" equals interest and a desire to solve a problem for these physicians.

So, in short, these are things that were talked about or have happened:
* Yet another Colonoscopy with biopsies tomorrow at 2:00pm
* She is yellow. Not highlighter yellow, but definitely a soft hue of yellow. Her liver counts from late yesterday afternoon look fine, though. She will have counts again tomorrow morning. I do not like yellow :(
* Thursday morning she will swallow a tiny camera and for 8 hours it will travel her body while taking snapshots of her inside. There is an area in the stomach that cannot be seen by endoscopy or colonoscopy so this "swallow endoscopy" will allow us to see those areas.
*Her immune system is a mess. There are many lab results that have shown many abnormalities. Some are very concerning, actually. It is confusing to understand and even more confusing to explain. I will explain more later when we have even more tests back. Vaguely, she is IgG and IgA deficient. Her cells are not functioning properly. Her natural killer cells are low (you want these higher as they help fight infection). Her NBT test was abnormal.
The next couple days will reveal what they need to decide how they will treat her immune deficiencies. Kaitlin will most likely have blood work done too as the doctors are using her as a controller in some of their testing. As identical twins, there are fascinated that Kate hasn't presented as Liz has.
* UCLA has been called again and fecal transplant is yet again an option. Many of you have asked why this hasn't been done yet, especially since it has been in the News so often lately. I share your frustration, but I assure you there are reasons why this option hasn't been used yet. As much of a miracle procedure it sounds like-and has been for the few in the world who have had it done- it is major. Liz is unique too because of her immunity and there is extra concern about how her body would react to a donor's bacterias.

Please, please, please know how important your support and prayers and kindness is to how we face this all.