Tuesday

Surgery has been put off until Thursday.  It was a good day, though.  Piper is eating more, and peeing a "little" more.  It is still not enough though.  I'll try to write more later.

Good Day Today

Today was a good day!  Piper was in a fair mood most of the day.  She ate food today for the first time since Tuesday night!  She had strawberry ice cream, some strawberry yogurt and some apple juice!  She had about 10 ml of fluid output today.  It is not typical urine because it is brownish, but they are calling it pee so that makes me happy!!!!!

She had dialysis again today.  The have decided to place a more permanent catheter for dialysis purposes.  It will be removed once she no longer needs dialysis.  This will be surgically placed Wednesday morning.  So, another Wednesday in the OR.

Her heart rate and blood pressure have stabilized.  She has been put on another blood pressure medication.  Hopefully all will go well this week, and we'll be able to move to a regular room soon.

Thank you to everyone who has been praying for us.  We know He is listening.  Please continue to pray that her urine output increases and that she will start feeling better!

PICU Stinks!

We are all tired of being in the PICU.  I feel so bad for the families that spend months in there.  It has been quite a roller coaster!

Friday night and all day Saturday were very rough.  Piper cried almost the entire time.  We decided that she needed a mild sedative to calm her and help her to rest.  It worked wonders!  She rested last night and most of today.

Her blood pressure went up, so she is back on blood pressure medicine.  She drank some pedialyte tonight.  That was the first "food" she has had since Tuesday night.

In the past two days we have been able to remove 1 IV, 1 arterial line, cvp line, the braces to hold her arms straight, and the tube from her nose.  We are making progress!

Piper has also started pooing again.  This means her bowels are working again.  We are still waiting for her kidney to jump start and make some pee.  Please pray that Piper will pee soon!!

Friday

It was a very long day.  Piper's heart rate and blood pressure were better today.  She still hasn't peed, though.  So, she had her first dialysis.  She will have dialysis tomorrow and Sunday.  They will re-evaluate on Monday. 

Hoping for a good day tomorrow.  She is resting now. 

Praying For Pee

It has been a long day.  Piper still hasn't peed since surgery.  She has to pee to prove that her kidney is working properly.  Also, her heart rate has been raised all day.  She has been running a fever off and on, and she has been fighting a lot of pain.  They increased her pain meds tonight.  We hope if we minimize the pain, her heart rate will go down.  They have been pumping her full of fluids for the past 24 hours.  Unfortunately, her body doesn't know what to do with it all.  She is swollen from head to toe.  The worst part is that her abdomen is also swollen, and it is putting pressure on her incision.

Please pray that Piper pees.  I know it "sounds" silly, but it is very serious.  Thank you.

What A Day!?!?!!

So much to say!  This morning Piper was scheduled for surgery at Duke.  After a few scheduling delays, they finally started surgery around 12:30.  Things went well.  It took about 4 hours.  We spoke with both surgeons when they finished.  As expected, they removed the full right kidney.  They removed about 20% of her left kidney as well.  They removed all visible tumors!  She did well.  She didn't lose a lot of blood. 

They ran another test on Monday to determine how her (then) existing kidneys were balancing the kidney function.  They determined from that test that her left kidney was already carrying about 2/3 of the load.  This means that there should be less chance for the need for dialysis.  (Very good news!)

So, she is now in the PICU (pediatric intensive care unit).  She will remain there for another day or two.  She has a very large incision that will require a lot of healing.  She has a variety of tubes and IV's in addition to her port being accessed.   We do not know what the next week or so will look like, but I am feeling optimistic.  We haven't been told if she will still need more chemo or not.  We are expecting that she will have another 6 weeks, though.

For now, she is resting.  I pray that she sleeps peacefully tonight.  We thank you all for your continued prayers and support.  We had so many people praying for our little girl today.  I felt like I had God's army standing right behind me.  I hope Piper felt it too!

Preparing For Surgery

The following is an email that I sent to some close friends and family.  It is a summary of how things have been going, and what is ahead....

Piper has been doing well with this latest round of chemo.  She managed to make it through the last few weeks without having to be admitted again.  For that, we are so grateful!  Her counts are all up now, and she is full of energy!!!  We had an appointment on Tuesday for a CT Scan.  The scan showed exactly what the Dr.'s anticipated.  There isn't any way that they can save her right kidney.  The tumor is too large, and even with 12 weeks of chemo, it isn't shrinking much.  They will, however, be able to save part of her left kidney.  There are a few small tumors that remain.  There was considerable shrinkage over the past 12 weeks, though.  The surgeons think that they will be able to remove the tumors while leaving enough kidney to allow proper function.  We pray that he is right!!  Her surgery has been scheduled for Wednesday, June 8th.  We won't know what time until Tuesday evening.  We met with the surgeon (Dr. Henry Rice) this morning.  He is the same surgeon that placed Piper's port in March.  He is a wonderful person.  He actually will sit and talk to you...  so unlike the typical surgeon!

He told us that the surgery will take around 4+ hours.  They will have to do a very large incision across her entire abdomen.  She is going to have a rough road ahead for healing.  As soon as surgery is completed, she will be moved to the PICU.  Visitors will not be welcomed while she remains in PICU.  We hope that she will recover well enough to be moved to a regular room after 2-3 days.  They can't tell us how long it will take for her to heal.  They can't tell us much else until the surgery has been completed.  We choose to put our faith in God.  We know that He loves Piper more than we could ever understand.  (As a parent, that's so difficult to imagine.)  We know that He will take care of her, and that whatever happens will be for His glory.  We appreciate the prayers for Piper and our family.  Prayer is the greatest gift that anyone can give us right now!

I will try to keep everyone updated as we move through this process.  I really don't know what to expect for next week, so we will take it one day at a time.

Also, a lot of you know that we were very concerned with how we were going to care for Emma during this time.  We were so blessed recently.  A dear friend of ours found us a few qualified individuals on care.com.  She set up face to face interviews with a few of them.  The first person we met with was a perfect fit for our needs.  We hired Molly before she left the interview.  Emma loves her!!!  Molly is very flexible, and she is able to be here just about anytime to help.  She is really good with Emma.  Emma informed me the other day that "Molly likes bubbles, chalk and scooters!"  (Molly thought that was funny!)  She is a good sport, though, and she is taking very good care of our little girl.  It is such a blessing to know that Emma will be well taken care of.  .... although, I will still miss her dearly!

Again, we appreciate your prayers, your friendship, and the outpouring of love for our family.