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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Sunday, July 10, 2011

Things Are Going Good

Piper has had a good weekend!  She pulled her NG tube out twice in one night a few nights ago, so we decided she was trying to tell us something.  She wanted to eat.  They didn't replace the tube, and she has been eating on her own for a few days.  She is not eating great, but we are getting her to eat a few ounces of food at each meal.  We found out that patients that are experiencing kidney failure struggle with nausea, especially in the morning.  Add that to the nausea she is already experiencing from chemo, and it's amazing that she is eating anything!  Please pray that her appetite increases, and she is able to keep the food down.  Praise the Lord for Zofran!!!!  (wonder drug for nausea) 

Piper is currently not attached to any machines!!  She doesn't have the feeding tube for the feed machine, and she isn't getting fluids or IV meds.  This is really nice because we don't have to take her IV pole with us when we go for walks.  Daddy brought her red wagon to the hospital so she can ride around in it when we are out walking.  We try to take a lot of walks.  It does us both a lot of good to get out of the room!

So now we start a new week.  This week we expect to have another surgery to place a catheter for administering peritoneal dialysis.  We don't know when the surgery will take place.  It should be fairly short and routine, but surgery is surgery.  Mommy doesn't enjoy handing her baby girl over to a stranger and walking away.  I know that this will make things better for her, though.  Peritoneal dialysis is a procedure that we can do in our own home every day.  This will allow her the benefits of dialysis without having to come to the clinic 3-4 times a week. 

We keep praying for lots of pee.  We aren't giving up yet.  We know that God can heal her kidney, but we also know that if he heals her, it will be in His time, not ours.  That's not really easy for Mommy and Daddy to accept, but we must keep faith.  Please pray for Piper to start eating well, for so much pee that we have leaky diapers, and strength for our whole family.  Sometimes I think Piper is stronger than all of us put together!