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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Thursday, July 21, 2011

Lots Going On

This has been a crazy week.  Piper had dialysis on Monday.  While we were there they realized her hemoglobin was low so she needed a blood transfusion.  They also needed to flush her new catheter line.  That is a long process.  Monday night she got sick, and she threw up quite a bit.  On Tuesday we had to go to hem/onc clinic for labs and chemotherapy.  While we were there, they decided they needed to change the dressing on her new PD catheter.  That was not fun!  On Wednesday, Piper was scheduled for dialysis.  Her catheter had a clot in it, so it wouldn't work.  They had to put something in it to help break up the clot.  So, she could not get dialysis.  While we were there, they needed to flush her new PD catheter again.  We were finally allowed to leave around lunch time.  We went to the cafeteria to get some lunch before heading home.  Piper got sick while we were eating in the cafeteria.  Wednesday night after dinner Piper developed a fever.  She reached 101.5.  That meant a trip to the ER for blood cultures and antibiotics.  Thankfully her counts were good so they didn't admit her!  They wanted to draw cultures from her port and both of her catheters.  The dialysis team couldn't get to the ER until midnight.  I 'kindly' convinced the doctors that they already had cultures from her port and we needed to go home and get some rest.  They finally agreed to give her antibiotics and let us go.  We got home around 2 am.  This morning Piper had to come back for another try at dialysis.  Her catheter is working!  Praise the Lord!  So now we sit for three hours until dialysis is finished.  She is also scheduled for dialysis on Friday and Saturday.  Sunday is our day off!!!!!!