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.

Search This Blog

Tuesday, March 12, 2013

Spring 2013

I haven't posted in quite a while.  It's been a frustrating winter concerning Piper's medical care.  We were advised last year that she should have received her transplant in the fall.  The fall came and went with no transplant.  The doctors and surgeons at UNC keep stating that they will re-evaluate Piper's case again in a month or so.  Every time they re-evaluate, they find a reason to push out the date again.  So, as of our latest conversations, they are talking about a summer date for transplant.

The surgeons at UNC want her to have another surgery 2 weeks prior to her transplant to remove the existing kidney tissue.  We want them to rather do both of these procedures at the same time.  The separate surgery would cause a lot of additional pain and it would put Piper at a high risk for infection.  We obviously don't want her to have to go through any more suffering than necessary.  We aren't sure what to do now, but we are praying about it.

We have had a lot of fun as a family this winter, though.  We spent a week at Disney.  Both of the girls had an amazing time visiting with their favorite Disney friends and Princesses!  We had a wonderful Christmas together.  The girls both did great when they visited Santa at the mall.  We had lots of family and friends around for the Christmas season.

Piper has unfortunately had a cold that has lingered about since November.  In January, she was officially diagnosed with the flu and an ear infection.  It seems like every other week she has caught another new bug.  This all caught up with her last Saturday.  On Piper's third birthday (3/2/13) she woke up with her right eye swollen almost shut.  We went to the pediatrician, but they weren't really sure what was causing it.  The next day we went to the Duke ER first thing in the morning.  She was admitted and stayed 3 nights while they treated her with a lot of antibiotics.  Apparently, all of the colds and congestion this winter had caused an ugly infection above her sinuses and beside her eye causing the eye to swell all around.  It wasn't pretty!

So, we have made a decision that none of us like but we need to do....  Until Piper has recovered from transplant this year, we will need to eliminate as much risk of infection and viruses as possible.  This means that we won't be able to go to church for quite a while.  The church nursery seems to be a breeding ground for any and all viruses.  We'll also need to remove ourselves from public groups and situations where she could catch something.  Isolation stinks.  We're praying that God will protect us all from any further illness this year.

We will probably not be seeing many friends for quite a while.  Please pray for our family as this will be a very tough time.