We Will Rebuild Her

There's a reason why it's called C. diff, short for C difficile. 3 times in 40 days. 30 days of antibiotics in 40 days. She never had any antibiotics before this.

I've been so heart broken watching Sylvie wince in pain and tell me her tummy hurts because I erroneously keep telling her that every day she'll feel better and better which clearly isn't the case.

I took Sylvie to the Reuten outpatient clinic on Monday for labs and to see Dr. Harris. At this point, I want to know why Sylvie's stomach hurts and what we can do to fix it. Now. He rechecked her lab results from the prior week which came back suspiciously negative.

Some positive news here,side, Sylvie's counts are slowly coming back. So on Tuesday, Sylvie went to camp at her preschool and it was a fairy land adventure theme which as you can imagine, goes over very well with her. They stayed for 90 minutes, had a ball and came home because Sylvie's tummy hurt. Grrrr.

Yesterday, I went to the office while Michael took off and brought Sylvie to the clinic. Shortly after they arrived, Sylvie proceeded to poop all over Michael and herself upon which they were sequestered in a room until Sibel could come with new clothes for them both. Terry was Sylvie's nurse for the day and immediately said, I think it's C. diff. I left work early because Michael also had a 2 hour root canal procedure and was pretty out of it. It was my night to sit at the kitchen table and mix vials, set up the TPN for the night and hook up Sylvie's "backpack" while she entertained herself watching the Laurie Berkner movie and Michael slept.

When we talked about the good things before bedtime, she asked if we could go to the hair salon and get her hair back. On that note I brought her into my bathroom and gave her every single fancy barrette and clip I have, put them in a fancy blue box and gave them to Sylvie with the promise that when her hair grows back, she can wear them. She has carried them around ever since. Then again, she also carries around Hello Kitty stickers, a Cinderella flashlight, Hanna Montana lip glosses, Barbie nail polish and about 20 other things. She will be a big handbag girl just like her mom, grandma and great grandma!

So for the third time in 40 days, Sylvie has C. diff infection only this time instead of Vancomycin ($90 for a 10-day supply!!!), we're trying Flagyl. I have no idea how much it is. Michael left work early to run to Town & Country Compounding Pharmacy to pick it up. I guess if you need good news, Sylvie no longer needs Neupogen shots! Yippee! We are ALL very happy about that. The doctors think that once Sylvie's immune system bounces back C. diff will be history. In addition, both Dr. Rosen and the head of integrative pediatric oncology nutrition at Columbia, Elena Ladas, recommend a particular probiotic which I will get in the next day or so. Speaking of which, when I talked to Elena yesterday for the first time, she said to me, "We will rebuild Sylvie!" which sounded very Arnold Schwarzenegger to me but yes, we must rebuild Sylvie.

Sylvie has 3 CT scans on Monday and we then have a meeting with Dr. Harris.