Getting Closer...

We're getting close to the big day.  Less than a week to go.  We're feeling very positive about things, and we know there are so many friends and family members praying for us.  I still feel like I have a ton to do before the big day.

Our freezer is pretty full at this point.  If nothing else, we will eat!

My sister is scheduled to arrive Saturday.  I'm super excited.  We don't get to see her much because she lives so far away.

Now I just need to make sure no one gets sick before Monday.  Every time someone sneezes, I get nervous.  We all deal with seasonal allergies, so there's always some sneezing going on around here...  I put humidifiers in the girls' rooms, and we rarely leave the house now.  If only they sold giant bubbles on Amazon to wrap the house in until then.  ;-)

We did get a surprising call yesterday.  It was from our pharmacy.  (We really love our pharmacy).  They called to chat with me about Piper's future medications.  They also wanted us to know that they keep a prayer box, and they will be praying for our family as we go through surgery and recovery.  Isn't that awesome?!?  I never imagined receiving such personal and caring service from a pharmacy!  God has really placed us with some amazing people.  Recently our pediatrician wanted to pray with us as well.  It's comforting to know that we're being covered with God's love and provision.

Hopefully my next post will be one of celebration.  Thank you to all of our friends and family for your love and support.

3 Weeks To Go...

We have 3 weeks until our surgery date.  We're doing our best to prepare for everything that's going to happen.  I have been told that I will not be my energetic self for a couple of weeks after surgery.  I won't be able to do all of the things that I currently do each day so I'm doing as much as possible in advance.

We're stocking the freezer with lots of home made yummy meals and treats.  We have lasagnas, stuffed shells, burritos, waffles, muffins and a lot more to follow!  I've been spending a lot of time in the kitchen!

We're preparing the house.  Okay, more like I need to prepare the house.  I really need to give the whole house a good cleaning!  I have accomplished cleaning out the pantry.  It's always so pretty when it's clean and organized.  Hopefully it will last a month or two.  At least it is well stocked after my (oh so very expensive) trip to BJ's last week.

We're getting me ready.  I finally ordered a new pair of glasses.  I didn't realize that it had been 4 years since I've had new glasses!  I guess it just hasn't been a priority.  We've been a bit busy with other things.

We have a few more appointments to attend.  Piper has a dentist appointment, her monthly nephrology appointment and finally her pre-op appointment.  After next week we shouldn't have anywhere to go until surgery day!!!

We're preparing our hearts!  We've been doing a lot of praying.  Praying for our situation as well as others.  My uncle has been dealing with a lot of medical issues for the past couple of months and he had a big procedure done yesterday that will have a huge impact on his life.  I've received sad news about more than one child who is fighting or has lost their fight with cancer this past month.  There are a lot of things going on around us that remind us just how much we need God in our lives.  He is the one unshakeable, consistent, always loving source of hope.  It's nice to know that He can't be broken.

We have had a lot of friends that have asked if they could come and visit one time before surgery.  After a lot of prayer, I have decided that we won't be able to invite anyone into our home at this time.  We just received our flu shots last week.  They take a few weeks to work.  The flu and norovirus are spreading throughout Wake county right now, and we just can't risk getting sick.  I hope everyone understands why we have to make these decisions.  They're not easy.  We appreciate the love, support and prayers that are offered by our friends and family.  We look forward to a lot of celebrations, picnics and fun times in the future!!

We Have A Date!

Piper wearing her Poppa's hat.  She loves to wear Poppa's hats!

It's been a long time since we've had anything exciting to share.  The last 2+ years have been a very long road, but we are hoping for a break very soon!  Piper's transplant surgery has been approved and put on the calendar for October 28th!  I have been approved again to be her donor.  We are so excited, anxious, scared, hopeful, and most of all grateful!

We have a lot of family and friends who want to help, but unfortunately we'll be in a time of "isolation" before and following the surgery (for about 3 months).  Piper will have virtually no immune system, and we'll be entering "flu season".  She will not be able to go anywhere except her doctor appointments for a while, and she'll even have to wear a face mask when she goes there.  We will also not be able to be on the go very much because we don't want to bring home any cold or flu bugs.  We will only be able to have "primary caregivers" present in the hospital and at home following surgery.  Any unnecessary houseguests are a big no-no.  This will probably make for a strange Thanksgiving and Christmas.   We won't be out shopping anywhere, and we won't be attending any get togethers.

I know a lot of people would like to help by preparing a meal or running an errand for our family.  We will not turn away a meal that a caring friend has prepared for us, but we can't invite anyone in to visit (at least not for a while).  This will be a bit awkward, but it's what we have been advised to do.

Piper is expected to be in the hospital for 4-5 days, and I am only expected to be in the hospital for about 2 days.  We each have a designated caregiver (thanks to my sister)!  We also have someone designated to help with Piper's big sister during this time.  God has provided all of the resources that we need to get through this, and we are so grateful!

We ask for prayer as we are counting down the days until surgery.  We have a lot of preparation to do here at home.  I'll be busy cleaning the house, stocking the freezer and attending all of our final appointments.  My husband will be a bit of a nervous wreck as he will be facing one of the toughest days of his life.  He will have to hand both his wife and his baby girl over to surgeons that day, and then he'll have to sit and wait for hours before knowing we're both okay.

We know that these next few months are really a small amount of time, and we have so much freedom to look forward to starting next year.  We are so grateful to all of our friends and family (near and far) for the continued prayers and support.  We know that God is listening, and He has been very present in our lives.  We pray that Piper's story will strengthen and encourage others.  She is one tough cookie!

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.

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!

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.

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!!