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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Wednesday, June 15, 2011

A Lot Going On

The past few days have been very busy.  Piper had to have another surgery today.  She had a more permanent catheter placed in her chest to receive dialysis.  We hope she won't need this long.  Her kidney needs to start working better before they will remove it.  They did remove the temporary catheter, though.  She has been taken off of the IV blood pressure medicine.  She was placed on an oral medicine instead.  Her blood pressure is getting under control.  She has been eating regular food, but the Dr.s don't think she is getting enough calories and nutrients to support her body during the healing process.  Therefore, she had a feeding tube placed tonight.  She was not happy, but it will help her.  Hopfully they will remove it soon!  She has been having daily ultrasounds to monitor the flow in her kidney.  It has increased slightly in the top and middle poles, and it is starting to appear in the lower pole.  This could be a sign that her kidney is "waking up".  She is continuing to have dialysis.  We are hoping it will help to remove some of the puffiness and water weight.  She has absorbed so much fluid since surgery that she has gained over 5 lbs. this week!  She is now a very heavy baby!!!!  I feel bad for her because I know how uncomfortable it can be to have so much fluid on you. 

Some good news. ...  She has started to make some happier sounds and somewhat talk!  She has said "no", "uh oh", and "num num".  She has also played with some small toys and a stethoscope!  This is a big improvement.  We are so happy to see her personality coming around!  Also, she has started to pee, but it is very minimal.  We need a lot more!!!  We were told today that it is possible that we might be out of PICU by the weekend!  I know that that is not a guarantee, but it is something to be hopeful for!  They will move us to a regular room.  That would be so nice!

Thank you to everyone for all of the continued prayers and support.  Please continue to pray for Piper's comfort and healing.   Sorry if this is a bit of a ramble.  There is a lot to share, and I am too tired to worry about grammar and word flow.  ;-)