Life is wonderful and difficult... and I am grateful!

Thursday, September 29, 2011

These Boots



Only Elizabeth Claire would go to the hospital wheezing, bleeding, in pain, tired and just plain sick....dressed like this. I swear, this kid was born looking for the nearest red carpet or runway. Once again, those who doubt God and go for the whole science reason for our being here, I will say to look at my twins. Same DNA, same fingerprints, same environment at the same time, yet they were born different; they were born who they are. And Liz was born addicted to fashion and probably wondering why in the heck she wasn't dressed in a great jean or shoe as she entered this wonderful world. Anyway, those boots were just too much today and she giggled as I sang "These Boots Were Made For Walking'" to her. Alright, I will admit that I may have added my own take on the song and inserted a sentence that may have gone something like "these boots are made for kicking CDiff's you-know-what!" I am not saying I did. But maybe. Probably.


Liz is sick. Tuesday she left school early with a horrible sore throat, fever, and just feeling bad. I took her to the pediatrician Wednesday morning because I saw white spots in her throat and with Liz we have to watch her super close because she can't be on antibiotics right now if we can avoid it at all. Her doctor thinks she has a respiratory virus again and we'll watch her for the next few days. Her chest hurts because air isn't moving as it should through her lungs so we upped her breathing treatments to four times a day. We're doing sinus rinses daily to help clear her out so that we can avoid another sinus infection (which would require antibiotics, which would be awful). Short of putting her in a bubble, we can't do much. So, there's that.
And then there's this.....
We think her CDiff was not cured by the last round of antibiotics as we'd hoped and that it is beginning to rage, causing the colitis again. She's had some blood over the past few days in her stool but last night, as I was running out to two meetings, she called me to the bathroom and she'd had a lot of bleeding. I thought I was going to throw up I was so upset.
Today we went to her GI doctor and he examined her which resulted in her admitting to a pain level of 7 when he pressed on her stomach. Liz is usually not as honest as we'd like her to be, hiding how much pain she is in or how bad she feels. I'd hide it to if I were her.
I'll take stool samples to the lab tomorrow and we'll see what those show. The doctor talked with me about cases where the test is a false negative, so we'll have to follow that road perhaps if these labs come back negative. UCLA is being so we can get back on the fecal transplant "train"...it is a process.
She's lost a pound in just 10 days, which may not sound like much, but for her is huge. It took her a lot of work to gain weight, so losing it is a bummer.

This afternoon she told me she does not want to die and that she knows she probably will if she has the transplant. Oh my. I gasped, actually. She is sure, she says, because she has heard us all talk about how new the procedure is and how rarely it has been done in the States. I asked her to remember what else she has heard us all discuss...that it is an easy procedure and while there are risks, riding a bike is risky. Life is risky in general and she can't be worried about dying. I asked her to remember how I have always been so honest with her about everything medical and she needs to feel in control as much as she can, so that she will have all of her concerns addressed before I "sign the papers" and I will allow her to sign them too. She nodded, said 'we'll see" and then asked for a kitty.
Sweet girl.

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