Are you kidding me? For real.

Are you {freaking} kidding me? I have said this phrase many times before, I know, but now I really, really mean it.

I have no idea if anyone continues to read the blog, but I am going to keep it going as it serves as a journal for me; a history if I need reference...and if Liz can benefit from the prayers of those who may read it, then that is even better.

Elizabeth has a small team of infectious disease doctors working on her case, but we primarily deal with two. One of them is a female doctor who makes me want to read a bio about her each time we speak. She has a thick German accent, is an older woman who glares at you as she peers from over her glasses and asks many questions, but doesn't speak much at all. An infectious disease doctor spends much time putting together the "puzzle" of each patient's case or disease and I assume that this doctor gathers her facts and then goes off to think. Or maybe she just doesn't want to talk to me...in any case, I think she must have such a story of her life and she fascinates me. Anyway, she was the doctor I spoke to on Monday when it became obvious Liz was quickly getting worse and the "main" doc I have been dealing with was still away on vacation. Yesterday the in-charge, hot (yeah, I said it) physician was back in town and called me to update me on what the team has been considering for Liz.

For the next few days, Liz will stay on the Vancomycin. Vanco. is a "first-line" drug.... it is a hard-hitting, almost always effective antibiotic. The Infectious Disease doctor told me they have not had a patient like Elizabeth in years; Liz's infection is hanging on much longer than they see normally. The Vanco. is not curing the infection, but it at least holds it at-bay. When she is on the full dose of the Vanco. her bleeding, diarrhea, fevers and fatigue go away. Once we pull back on the dose, the symptoms surface again and her colitis returns as well. The problem is that a person cannot take the Vancomycin forever and that the CDiff toxin needs to be held under control without having to be on an antibiotic all of the time. After having been on the Vancomycin for three months, it is a real possibility that though the drug is helping the symptoms, it is not a drug that, for Elizabeth, will cure the infection....and this is a problem.
There are so few drugs that work to rid the CDiff infection. Flagyl is one, but she is now allergic to that. The only other drugs are untested on children and so that would carry it's own risk. A bit of "uncharted territory", in the words of her doctor.

So, she'll stay on the amped-up dose of the Vancomycin for the next few days. On Monday we will see the Infectious Disease doctors to talk about a plan and weigh risks and benefits. This doc has said he doesn't care about testing her stool over and over again until she appears well-that her symptoms will speak for her, but he now wants to test it... my cousin who is a doctor said that perhaps he wants to see if it grows out as being resistant to the Vancomycin. She'll have more labs done on Monday as well.

I am feeling pressured for time as she would not be able to attend school with these symptoms and feeling so exhausted and yucky. Yesterday, after the doctor told me to "hang in there" I jokingly, but seriously, told him that he has until September
1st to "fix her!" Until then, my poor girl is so tired and her bum is so painful and she is so irritated by all of this. Praying her body will make a turn-about and decide to rid itself of this nasty infection. If you read this and if you pray for my Liz, thank you!

* On a positive note... she is eating. We definitely see the difference the appetite stimulant is making. Can't wait to get her on the scale and see that she's gained weight : )