Stuck

I have become a professional poop-smearer. Seriously. I should offer my services to others in an effort to make some money as I have developed a strong stomach and tolerance for "gross." These cards, when it is not obvious that Liz is bleeding, let us know if she has blood in her stool. Gross! Not fun at all.....





....but this IS super fun.....

The girls and I made a trip to Nordstrom to shop for shoes. In perfect pre-teen form, they suggested that since we were already at the store we should also shop for things other than shoes. I love this shot of the girls because they were touching, like they often do, without even knowing they are. I cling to images like this when I hear them arguing or see them lash out of each other.
Such a fun little girls-only outing.






I heard from the doctors yesterday. I cannot tell you how over I am hearing "this is rare" or "this doesn't happen" or "uncharted territory" or "untested on children" when having to do with Elizabeth. My Elizabeth, who I don't want to be rare or a first-case or first-to-use patient. She is precious-her body is precious- and I don't want anything to change her. The fact is, though, this infection that has taken residence in her, is changing her and we must stop it, and to do that we have to go a route that is making everyone a bit nervous.
I have been on the phone for two days straight, it feels, with the doctors and nurses. They have been calling me which is never a good sign.

So, here's where we stand - we have 3 options:
1. Do nothing. It is an option, but even the conservative doc, who advises antibiotics as though he's handing out rare diamonds, feels we can't wait. She still has symptoms and she needs to be on an antibiotic to reduce the toxin and kill the infection.
2. Use one of the two untested drugs.
3. Do the fecal transplant
4. Run away to a resort in Mexico, where we'd all develop diarrhea anyway, so Liz would fit right in, but at least we'd be on a beautiful beach and have access to super-cheap drugs. Seriously an option in my mind.

The Infectious Disease team at Millers has recommended we try one of the drugs.
We were lucky to have had our insurance cover much of the cost of the drugs she has been on since April- over $10,000 worth. I was especially lucky because the wonderful Infectious Disease doc she has and his staff did all the paperwork and phone calls required- a huge gift to me as I usually have to be the one to deal with the insurance. Now, though, our insurance is saying they will only pay for 3 days on the new drug and we will have to pay for the remainder of the weeks she'll be on it. The docs want her to start it right now and we can't wait for the insurance to agree to covering a longer period, so we're just going to go for it and file an appeal with our insurance company. This is the stuff that kills me! I speak English, I am smart and I have common sense (what a catch I am!) and I am comfortable dealing with all of this medical stuff. Can you imagine if I lacked these things; how difficult it must be for those who do.
Anyway, she is to start the drug tomorrow. She has an appointment in the morning with her GI doctor because her nausea, retching and pain has increased since last week. I will get his opinion on the drug before actually giving her the first dose.

I also heard from am Infectious Disease doctor at UCLA today. He reviewed her file and has asked to see her on Monday morning, so we will head there for a second opinion. This man was incredibly sweet and he is going to speak to the GI team at UCLA and the adult infectious disease doctors there before Liz's appointment, so that he is prepared to talk about the fecal transplant.
I have felt comfortable with her Infectious Disease doctors here in LB, but I think it is time for another opinion and knowing there hasn't been a pediatric fecal transplant done at Millers, confirms my need to get the opinion of another team.

As for how she is doing.... she is sick. She is in the bathroom more the last 2 days than she has been and her poor tummy hurts. Her appetite was less today than it was yesterday. We had a fun trip to the store last night and then she spent an hour playing at the park and on her scooter, so today she napped mid-morning and then stayed inside. She has been much worse before, but she is not feeling well and if we don't get her started on something soon she will only get worse.

So that's it. We are stuck in a way. I remind myself that it is better to be stuck than to be without- to have to be without medical care or antibiotics. If we were in many countries, Liz would be in big trouble at this point. I could say more, but I think it is obvious just how much trouble.