Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

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Tuesday, July 5, 2011

Day 28

We have been here now for 4 weeks.  Our frustrations have been growing and growing.  We have felt like the nephrology team hasn't been on the same page for a while now.  We feel like they aren't making any plans to let us go home and continue treatments as an outpatient.  We did some research, and we contacted a doctor in Boston.  I have been communicating with him this week.  I told the teams at Duke that we are also consulting with this doctor.  I also told them today that we are frustrated with the way they are handling or not handling things.  So, tomorrow they are doing a new scan to determine her current kidney function.  They also mentioned this evening that they are working on a plan to get us home soon!  Now let's see if they're serious.

Please keep praying that her kidney will wake up and srtart working soon!!!  The doctor in Boston said it could take up to 3 months.  If it hasn't started working by then, they consider it kidney failure.  Please keep praying.  We know that He hears.  Please also keep our new friend Suzanna in prayer.  She also has wilms, and she is having her surgery tomorrow (Wednesday).