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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Wednesday, December 18, 2013

Getting Back To Normal

It's been a month and a half since Piper's transplant.  She has been doing amazing!  Throughout the month of November she had to go to clinic every Monday, Wednesday, and Friday.  They told us that she could drop down to twice a week in December.  She is doing so well, though, that she only has to go once a week!!  Her labs are all looking great and moving in the right direction.  We are so grateful for this blessing.

She is also eating like a champ!  She now loves cheeseburgers, hot dogs, pizza and ice cream.  We have a little bit of a junk food junkie on our hands.  We're trying to lean her more toward yogurt, chicken, turkey, vegetables....  On a good note, she now likes cheese and milk!  Her body is desperately in need of healthy calcium!  This is the first time in her life that she's been able to eat almost anything and she's happy to do it!  The only thing she cannot eat is grapefruit.  I don't think she'll be complaining....

I am also doing really well.  I have healed quickly, and am almost back to normal.  I look forward to getting some regular exercise again soon.

We are looking forward to a somewhat normal Christmas.  We've been baking cookies and decorating. The girls have been singing every Christmas carol they know.  The doctors even approved a special trip to the mall to see Santa (as long as we went during daytime weekday hours)!  We visited Santa on Monday morning when no one was really at the mall yet.  Piper told Santa that she wanted a purple LeapPad.  She called it a Pi-pod though....  That's what she calls Emma's.  Santa told her that he liked her purple glasses, and that he also likes the color purple.  She has told me countless times this week that Santa likes purple too.  I think that made her day!!

We are praying that we will all be able to avoid all of the colds and bugs that are lurking around.  We don't want to spend our Christmas at Duke.

We hope you all have a Merry Christmas!  Be safe and enjoy!

Monday, November 4, 2013

Our First Week With Piper's New Kidney

Last week at this time I was sitting in the pre-op area at Duke wearing a red surgical cap that made me look like a cross between Ronald McDonald and little orphan Annie.  I knew exactly what I was doing, and I knew that God was with me so I felt quite comfortable.  I don't remember falling asleep, and I barely remember waking up.  All I know is once I woke up, I was TIRED!  I didn't really hurt at all, but I just wanted to sleep the entire night. I was told that Piper was doing well.  I didn't finally make it to my room until 9 or 10 pm.  I knew my daughter had a new kidney and it started working right away!  I was happy.

Then, I started hurting; but not in the surgical area.  I got a migraine!  Ugh...  I had a migraine that lasted from the wee hours of Tuesday morning through Wednesday morning.  I actually felt a little better Tuesday afternoon so I asked my nurse to take me to see my daughter.  She did.  She wheeled me up to the PICU and I got to visit with Piper for about 5 minutes.   After our visit, my headache came back.  I felt better the next morning, though.  I forced myself to eat the "hospital applesauce", which is terrible.  I drank as much water and juice as I could, and the doctors were happy.  They sent me home Wednesday around lunchtime.  I had to stop and see Piper (and Brian) before I left, though.

Every day since, we've gotten up as soon as we could to go visit.  I've been trying to take it easy as I have quite a bit of healing to do.  My neck has been out of place and causing me great pain this week and I get very tired quick.  I can't lift anything over 5 lbs., and I can't drive.  After a week of healing, though, I am feeling pretty good.

Piper was moved out of the PICU on Halloween.  She was moved to the step down unit.  She didn't want to dress up for Halloween, but her PT nurse came and put her in a wheelchair, and Brian was able to take her Trick or Treating at Duke.  She got lots of great toys, and I'm sure it was good for her to get out of the room.  The next day she was moved to another room on "the floor".  She's been there every since.  She's making improvements every day.  She is now walking and talking quite well.  She wanted to play some games and play with her doll.  She has to start eating and drinking well, though.  It is possible she could come home any day now as long as she starts eating/drinking enough.  She told me that when she comes home she doesn't want "her machine" in her room.  My sister helped to pack up the dialysis machine last night, so it is out of sight and out of her room!

She has a long list of "all new" meds.  Brian has been doing an amazing job at the hospital making sure she's comfortable and managing all of her new needs.  He is going to have to educate me this time when she comes home.  She will stay on some of the meds for the rest of her life, but some only for a set period of time.  The most important part, though, is that my her new kidney is working great!

We are so grateful for the continued prayers and support as we continue on Piper's journey.  She is a tough kid.   (I'm not allowed to call her a baby anymore.  She gets mad.)  We know that God has been with us since day one, and He is using her in ways we could never even understand.  Hopefully I'll be able to post soon about Piper's homecoming!

Monday, October 28, 2013

Melissa and Piper are doing well and rest comfortably.   Piper has a new kidney and is peeing already.

Praise God!!!!!

Wednesday, October 23, 2013

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.

Tuesday, October 8, 2013

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!!

Thursday, October 3, 2013

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!

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!!

Wednesday, March 20, 2013

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.

Tuesday, March 12, 2013

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.