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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Tuesday, April 23, 2013

Answer To Prayer

On Saturday morning I glanced at the maps that our insurance company provides to detail the approved (in-network) transplant facilities.  It was updated and changed!

The North Carolina section now has 2 additional facilities listed.  Duke is listed and kidney is one of the approved options!!!!  I had to call and confirm, but I had to wait until Monday morning!  (For those of you that are unaware, as of last year our insurance company would not approve Piper's transplant at Duke unless we paid for it ourselves!  Read more here.)

Monday morning arrived, but before I could make phone calls I had to take Piper to the pediatrician for her 3 year old wellness check up.  She did great, and the strangest thing happened.  Her pediatrician asked questions about our transfer back to Duke and where we were considering for transplant.  I told her about the updated maps and that I needed to call the insurance company for confirmation.  Here's the strange part ....  she asked if she and another could pray for Piper before we left.  I, of course, said absolutely.  I believe so strongly in the power of prayer, and it's such a blessing that we stumbled upon a pediatrician who loves the Lord and prays for her patients.  I have never had a medical professional do this.  I'm sure most would thing it's crossing a line, but she knows us well enough to know that it was okay.

So, we ventured home ....  lollipops in mouth and treasure chest items in hand.  Big sister also chose a few treasures for being a good girl, and not interrupting mommy while I was talking to the doctor.  I made the call .....  and I left a message....

They finally called back within the hour, and the representative confirmed that Duke is now an approved "in-network" transplant facility for pediatric kidney transplant!  She double checked to make sure there weren't any additional restrictions on our policy, and she said it looked fine to her!  I immediately emailed the team at Duke to let them know.  They are having their team verify to make it "official".

So, it appears that God is answering our prayers .... in His time.  We really wanted her transplant to be at Duke.  We are so glad that we're back where we belong.  We feel "at home" at Duke.  We have been through so much there, and we feel comfortable knowing all of the doctors, nurses and staff so well.  We even had some of the doctors sending us emails saying "Welcome Home."

Oh, and some other wonderful news ....  The E/N/T at Duke had recommended (in March) that Piper have her adenoids removed.  This was in response to the cellulitis incident.  I called yesterday to finally schedule, but she changed her mind.  After further review of Piper's records and noting that she has been fine since March, she decided that Piper does not need to have her adenoids removed at this time! Praise the Lord!!!  One less thing to deal with!

Thank you God for answering our prayers.  Thank you for helping us to be patient while we wait for your timing.

Thursday, April 18, 2013

Returning To Duke

Yesterday Piper had an appointment with Duke nephrology.  This was her first visit since transferring her nephrology care back to Duke.  Things went well.  It was really just a review of her current prescriptions and treatment.  Oh, and lots of labs.  She always does so well with having her blood drawn, though.

Over the next month or so, we need to start the process of transferring her to a new transplant facility.  Our insurance will not cover her transplant at Duke, so we're considering going to Charlotte, NC for surgery.  Piper will also need to have her adenoids removed sometime soon.  That will happen at Duke.  We have to get that on the schedule yet.

Hopefully we'll know more soon!

Tuesday, April 16, 2013

Our Room With A View ... at UNC Hospital

Last Thursday night, we were getting the kids ready for bed.  My husband got Piper in her pajamas, and I set up her PD machine.  Big sister was in her room doing her bedtime preparations (tucking in her baby dolls, preparing her books to read in the morning ...  you know, important stuff!)  When I finished, I ran downstairs for a few minutes to take care of some things.  When I came back up to Piper's room to get her in bed, she was already laying in bed.  She had removed the cap from her PD line, threw it in the trash can, and then crawled in bed.  She laid there so proud of herself.  I think she truly thought she was helping us out!  ...  For those who don't know, anytime the PD line cap is removed, everyone should be wearing medical masks, the doors should be closed, your hands should have been adequately scrubbed, the vents shouldn't be blowing air ....  (the list goes on).  Essentially, this was very very very bad, and if any bacteria got on her line, it could create a horrible infection (peritonitis) in her peritoneal cavity.  Again, this would be very bad!  We immediately had to call the doctors.  They advised to not do her nightly dialysis, and come into the office first thing in the morning.

The next morning, we drove the hour it takes to get to the UNC dialysis clinic.  They drew a culture, and they felt that it looked cloudy.  Cloudy typically means peritonitis.  They sent us straight to the hospital to be admitted.  She did not have any other signs of infection, but we reluctantly went on to the hospital.  We sat for several hours in the lobby waiting to be admitted.  (not easy with an antsy 3 yo who really needs her nap right after lunch each day)  They finally got her in a room late that afternoon.  It was a room with a view.  I could see the entire parking garage, and our van was parked on the top floor so I could watch it.  Oh, and behind all of the parking garages, there actually was a nice view of rolling hills in the distance.

We did as we were advised, and we spent the night.  They watched her closely.  She never showed any other signs of an infection.  She had no fever.  Her appetite was better than usual.  She was running, jumping, climbing, and filled with energy.  This kid was fine.  The next day, we told the doctors that we were ready to take her home.  There wasn't anything they could do at the hospital but watch her.  We can watch her at home for free.  So, they weren't pleased, but we came to a compromise, and they approved her discharge.

We called in on Sunday evening for the official results of the culture.  It was negative.  She did not have peritonitis!!!!  So, we felt good.  We did the right things.  We made the right decisions.  We thank God for His protection.

This Wednesday Piper has her first appointment at Duke.  I'm very excited to have this transition complete, and find out what our next steps are.

Thursday, April 11, 2013

Changes ... changes ....

We never met with the surgeon.  (see previous post for details)  My husband and I both came to the conclusion that we no longer felt good about having Piper's transplant done at UNC.  There were just far too many confusing issues with the surgical team.  I am sure they are all wonderful at what they do, but we simply didn't feel comfortable anymore ....   so ......

We are transferring Piper's care back to Duke.  Piper had her final appointment at UNC today.  The nephrology team at UNC was always very good to us, and Piper had a great doctor.  We will miss them, but we feel that we are making the best decision for Piper's long term care.  Piper has her first appointment back at Duke next week.  We have missed the team at Duke while we were away, and we are excited to see each of them again! 

We will decide on which hospital we will use for the transplant facility.  Our insurance will still not pay for her to have transplant at Duke. 

There are a lot of things up in the air right now.  We don't know where, when or any other details of her transplant.  Please pray for our family as we're making new changes.  Thanks!! 

Here is a recent picture of Piper.  She found a cozy spot to sit and read the other day while we were doing school with big sister.  She's a good little girl, and she loves books!!