A lot has been happening lately... so here's an update.
Piper's nephrology appointments have been going well. She had to have her dialysis catheter tubing changed because it's been 6 months. The nurse changed it a few weeks ago. A few days later, Piper developed a tiny hole in her tubing. We went to the ER to have it repaired. They fixed it. They had to drain the fluid from her tummy that we leave in there every day, in case it was contaminated because of the hole. They replaced it with fresh dialysis fluid, and they added an antibiotic to make sure to kill any possible germs lurking around.... She immediately broke out in a rash all over and started sweating! We had to drain her tummy again, and they gave her some oral benadryl. That did the trick, but they made us spend the night just to make sure nothing else was going on. So, we're thinking it was a reaction to the antibiotic.
Yesterday (2/7), Piper had her 6 month off treatment ultrasound. We are pleased to share that there is still no evidence of disease. Nothing but good news there! Her oncologist says she looks good, so she'll go back in 3 months for the next scan.
We did, however, receive some frustrating news on Monday. Our insurance company called to tell us that they will cover Piper's medical treatments at Duke, but they can not cover Piper's transplant surgery at Duke. They want us to transfer to UNC for Piper's nephrology needs and for the transplant surgery. So, we're a little frustrated because Piper has been going to Duke for all of her "advanced" medical needs since birth. She knows the doctors, nurses and the surroundings. We are choosing to look at this as God's way of looking out for us, though. I keep telling myself that He knows where she can get the best treatment, and He will take care of her.
I signed the paperwork yesterday to share her medical records with UNC. We are waiting to find our when her first appointment will be scheduled. We are scheduled to see the nephrology team at Duke in a week or so.
She has been progressing so well lately. She is almost running now. She climbs on everything, and she is acting like a typical kid. Soon we'll be celebrating her 2nd birthday. What a celebration it will be!
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.