Meet with a Surgeon

A few weeks ago we explained our frustrations to Piper's nephrologist.  She advised that we meet with one of the surgeons to discuss further.  They have set up an appointment for us to meet with a surgeon on March 28.  I am not looking forward to this.  I feel like everyone we speak to at UNC is very biased, and they have no interest in the parents opinion.  I hope that this surgeon shocks me and actually listens.

Here are some of our favorite pictures from this winter.

Here is a picture of Piper at Disney.  We were riding the ferry from our resort to Downtown Disney.

The princesses getting ready for bed!

Sisters ...  Dancing at Disney!

Ready to go visit Santa at the mall.

Reading the Bible together before church one Sunday.

Piper got a new scooter for Christmas!

And Finally, Piper is in training for her future career as a pirate princess hairdresser doctor!

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.

Fall Pictures

Piper was all ready for church last Sunday!!!  She loves getting dressed up!

At Duke (September) coming out of sedation after CT.  Such a cutie when she's sleeping!

The Halloween crew.  They all really enjoyed Halloween this year!!!  Piper can't eat chocolate because of the kidney disease, but she didn't care.  It was all about the experience!!!  She was buzz-buzz-buzzing all around the neighborhood!!

Piper and her dog Buddy.  She recently renamed him "Buttons"!

Piper waiting for her eye appointment at Duke.  She was such a good girl that day!

Piper and her big sister Emma really love playing outside!!!  Emma got a scooter recently for her 4th birthday.  Piper is always quick to steal it!

Time To Relax and Breathe ....

October was a tough month.  We didn't receive the news that we were expecting from UNC.  I really let it get me down for a week or two.  I'm better now, though.  We did a lot of talking and praying.  We want to make sure we're making the right decisions for Piper and we're doing things because it's God's will, not just ours.  We considered getting a second opinion.  I started researching the insurance issues and the hospitals that our insurance company would approve of.  I became quickly overwhelmed.  I felt like I was spending every moment on the phone.  I was trying to get the correct information out of the not so informative insurance company.  I was battling with Duke billing.  I was dealing with UNC billing.  We are constantly having bills submitted incorrectly to the insurance companies, and it's a lot of work to convince the hospitals to resubmit them correctly.  I was also juggling, of course, the housework, the laundry, the homeschooling, and all of the doctors appointments.  Oh, and the holidays are coming....  = STRESS overload!

So, my wonderful husband and I made a decision.  We're not going to seek a second opinion at this time.  We are going to wait until December and let UNC redo Piper's scans.  They will re-evaluate then, and we will re-evaluate then as well.  For now, we are just going to relax and breathe.  We're going to try to spend our days just being "normal".  We've scheduled a vacation, and we're going to enjoy a relaxing holiday season. 

We appreciate the continued prayers and support.  I will post some new pictures soon!!!

UNC's Response

We finally received the call from UNC. They have agreed to list her as "inactive" on the transplant waiting list. They will not approve her for surgery at this time. They want to re-evaluate in 3 months... They're stalling... This is not the news we wanted. I have a feeling that she isn't supposed to be at UNC. Please God tell us where to take her.

Waiting Stinks...

On Monday, October 1st at 3pm, there was a meeting scheduled for Piper's transplant team (doctors, surgeons, ...) to review her case.  They were supposed to decide if she could be cleared for surgery or not.  No one has called to tell us anything.  I called and left a message this morning with her transplant coordinator, but no response yet. 

We also still haven't received approval for me to donate yet.  The doctors are requiring another visit for me before they will review my case again.  I have an appointment next Tuesday afternoon to see the nephrologist. 

So, we wait....  and wait ... and wait.... and wait....

Prayers for patience and God's hand to guide the staff at UNC would be much appreciated!  I'll post again when I hear something.