Cautious Optimism brought down by the hand of medicine

There was a light at the end of the tunnel…..too bad it was a faulty light bulb  illuminating a dead end. (sigh) What are you gonna do?

Zoe’s viral count was 700 on Tuesday after the cytogam & steroids last weekend. Her fever was gone and her tonsils are much much smaller. You can actually see between them. The Doctors were prepared to let her go home on oral valganciclovir yesterday providing the numbers were lower than 700. They wanted to make sure the low count wasn’t a fluke because of the cytogam. Well guess what……it was a fluke. The count yesterday was 3800.  Needless to say she is still in the hospital. They are going to repeat the test Monday. I forsee a higher number. The genotyping of the virus should be back next week. That will tell us if it’s a resistant strain of CMV. My money is on resistant. She’s been on the ganciclovir for 2 weeks now and without the cytogam her numbers keep increasing. From there I don’t know what the plan is. Honestly I don’t think the doctors know either. Her birthday is Friday and they say they want to have her out by her birthday. I’m not counting on it.

She has a biopsy Monday so I’ll probably update again Monday night or Tuesday…….from the hospital since that’s where we live again. Please have my mail forwarded.

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Published by Chrissy Snider

Zoe’s Heart began the day our world changed. My daughter, Zoe, received a heart transplant at just six years old. Six. In the span of childhood milestones and bedtime stories, we learned words like “transplant,” “rejection,” “ICU,” and “donor family.” We learned what it means to wait. To hope. To live in the in-between. This blog is our way of sharing the journey — the beautiful, the terrifying, the exhausting, and the miraculous. Zoe’s Heart exists for two reasons: To keep our family and friends updated as we walk this road. And to advocate fiercely for organ donation — because someone else’s yes saved my daughter’s life. This space is raw. It’s honest. It doesn’t pretend the hard parts don’t exist. But it also refuses to ignore the hope. We believe in celebrating progress, honoring the gift of life, and speaking openly about what transplant families experience behind hospital doors. Zoe is living proof that generosity changes everything. Thank you for being here. Thank you for following her journey. And if you ever find yourself wondering whether organ donation matters — it does. It saved our girl. Welcome to Zoe’s Heart.

3 comments on “Cautious Optimism brought down by the hand of medicine

  1. Damn – can’t this kid cut a break? My continued prayers.

    In ten years, this will be a distant (thankfully) memory. Prayers for that, as well.

  2. Melanie Edwards

    March 13, 2009 at 6:57 pm

    Hello, I am Jakubs Mommy …….Jakub Dr. is Dr. Boyle too.. Jakub got his new Heart 06/07/08…. Jakub was six yrs old. Jakub turned 7 on Feb 2. He is doing so very well. Please feel free to email us we would love to share stories..
    Melanie Edwards
    Hartville Ohio

  3. How is Zoe doing? Any updates? I am praying for her and your family that she is doing better today.

    Becca

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