Homecoming!!

WE ARE HOME!!  I feel like I could just end the blog entry with that one line.  We went into the hospital at 6am on Tuesday, April 23rd and left the hospital at 4pm on Monday, April 29th.  Basically, it was nearly a full 7 days we were there.  The surgeon said Nicole was setting a speed record for getting home.  I don't know about that because to all of us it seemed like a long time.  However, when you consider what was accomplished in those 7-days, it is incredibly amazing!!

When we arrived home the kids, Nathan included, were just thrilled to see her.  They had made a banner with the help of Aunt Terri....

Nicole was obviously very excited about her big welcome home.  Nicole was also greeted with 8 bags of presents, cards, and various other gifts to make her homecoming a giant success.  Nathan's car was just loaded down with bags and bags for Nicole.  What a great blessing from our friends at Mansfield Christian School!!  More than anything was just being home with her siblings.  Here are some great photo's showing the kids together...

I love this one!!  Nicole just loves her annoying little brother :)

Don't you just love Nicole's smile :)

Our 3 little's, Nicole, Caleb, and Katelynn certainly have their moments where they seem to hate each other, but for the most part they really love each other a lot.  And even though Nathan is not in these pictures he was just as thrilled to see Nicole as Caleb and Katelynn were.

Nicole is adjusting to life at home and so are we.  The biggest part of the post transplant life is the med's.  She is on anti-rejection med's that must be taken precisely at 12 hour intervals, with only a 20 minute window of error.  She is also on antiviral, antibiotics, antifungal, pain, phosphorous, magnesium, vitamin D, blood pressure, and GI med's.  There are interactions with these med's that prevents them from being taken at the same time.  Some must be taken 2 hours away from the anti-rejection med's.  Others with food.  Others after food.  All in all she must take med's 5 different times a day.  And speaking of that, as I am writing my phone just went off reminding me that it is time for her 8:30pm meds.  So I must stop and do this because it can't wait.  Such is the life of a post-transplant parent.

I'm back...In addition to these med's Nicole must try and meet a target fluid intake of 2 liters / day.  Sid must be constantly flushed to maintain good function :) For those of you that didn't read the earlier blogs Sid is the pet name affectionally given to Nicole's new kidney from Wendy!!

Monday and Thursday morning Nicole must have blood drawn at the lab, every Tuesday she has to go to Clinic back in Cleveland, and so on.  It really is a lot to think about and a lot of adjustments...but minor inconveniences compared to life with a fully functioning kidney.  Energy, clarity of thought, and, of course, let's not forget about life.  And speaking of life...here is this blog's thought to consider:

The Westminster Catechism teaches that the chief end of man is to glorify God and enjoy Him forever.  At creation God breathed into Adam the breath of life and man became a living soul.  The Lord walked with Adam and Eve in the garden of Eden and they enjoyed close communion and fellowship.  He truly was to be their joy and the purpose of their life.  This close communion was maintained until sin and Adam and Eve were put out of the garden.  Fellowship was broken.  If you go all the way to Revelation 21:3 the scripture says:

³ And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God.

Once again, we see at the end that the Lord will be back to dwelling with His people, just as at the beginning.  This eternal fellowship is made possible by the Lord Jesus Christ and his sacrifice paying the sin debt for all man-kind.  Surely, the Westminster Catechism is correct in saying that we were created to enjoy the Lord forever.  What is purposely missing from this lesson?  It is our circumstances.  The scripture NEVER teaches that we are only to enjoy God during good times.  And likewise, for some, the bad times.  (It is tempting to only seek after God when things get rough.)  The scripture NEVER teaches that we are to enjoy God when we are healthy or only when we are ill.  We are taught from the beginning of the book of Genesis to the end of the book of Revelation that our lives are to revolve around our relationship with God.  Am I the only one that finds this incredibly difficult to maintain day in and day out, year in and year out through all of our circumstances and life changes?  Maybe this comes natural to some, but not me.  Here is another change in my life.  Post-transplant life with Nicole.  What is this going to look like day in and day out?  How will I adjust?  How will we adjust?  How can we keep God first, when med's, fluids, clinics, blood draws, family, work, relationships, church, friends, and everything else demands a piece of our time.  Our life is going to be sliced up into so many divisions that it seems ridiculous to consider.  However, in thinking of life, and to redo a famous scripture that says man shall not leave by bread alone but by every word that proceeds from the mouth of God...man shall not live by medicine alone but by every word that proceeds from the mouth of God.  In other words, true life is not the life made possible by these med's, but by the Spirit of God.  Simple enough.  Time to get at it.

For His Glory,

Brian

Wendy is Home and Nicole is Rocking - A Selfless Sacrifice

The past two days have just been fantastic.  At the time of my last blog entry Wendy was starting on her uphill climb to feeling better and Nicole was moved to her regular room.  Since then, Wendy just got better and better and was released from the hospital early this afternoon!!  Incredibly fantastic.  She came over to see Nicole in her room yesterday and again today.  Today, before she left, you would have hardly known that she had just donated a major organ to Nicole.  It was just an amazing transformation in two days and I am so thankful she made it over her struggles that she was experiencing.  Thank you all for praying for her.  I texted her this morning to thank her once again for her amazing sacrifice to Nicole.  I am sure she would not mind me putting her response down for you all to read.  It just captures what an amazing, selfless person Wendy is....

"I am humbled and blessed to be a part of this miracle.  I would do it all over in a heartbeat after seeing her (Nicole) yesterday.  God is so good...."

Keep in mind, this is coming from a lady that just had a hole gashed in her side and had spent a few days in total misery and discomfort.  As she watched Nicole play and bounce around this morning in our room you could just tell that what she said was the truth.  She would endure all of this again for Nicole....and she says that she was humbled.  I would like to say that I am humbled as well.  Here is a picture taken in Nicole's room this morning.  I can see Wendy being in Nicole's life for a very long time.

 

 



 

For Nicole, her kidney functions have just continued to improve and she is rockin'.  She is totally off fluids through the IV and has a target fluid intake of 2 liters per day.  She is used to drinking a lot so that should be doable with a bit of encouragement.  Titia and I asked her if she wanted to play this morning in the play room and she jumped out of bed and practically ran to the play room.  There was no keeping her down today.  The drugs are wearing off and she is really starting to feel good.  SID, her new kidney, is really producing a ton of urine and her creatinine, increased levels being a primary indicator of renal failure, have improved from a pre-operation level of 3.2+ to 0.5, well within normal levels.  Everything is working just as it should right now.  We have gotten past the critical first 24-48 hours and now we are on to phase 2, getting through the first few months.  Here are some pictures of Nicole playing today...

 

 

Nicole has had a lot of visitors since we have been up here.  I started to list them but there have been so many I am certain I will forget someone so I am going to forego that temptation :).  But here is a great picture of 3 of her primary teachers this year at Mansfield Christian as well Cy Smith, the superintendent at MCS.  Please know that Nicole, Titia, and I are all thankful for those that have visited, called, prayed, posted FaceBook messages, and sent texts to provide encouragement at this critical time.  It has meant so much to us.

 



Where do we go from here?  Well, the docs have said that they see no reason why Nicole can't go home on Monday.  I am no doctor, but from watching her bounce off the walls today I would have to agree.  I am afraid she is going to take laps around the floor tomorrow.  Keeping this girl down with SID rockin' in her is going to be a difficult task.  The last thing Stu Killian said after seeing her this morning was..."good luck".  He could see that this little girl with a fully functioning body is going to be a dynamo of energy.  That is a great problem to have!!!

The last thing the staff here is working on is the balance of her anti-rejection meds.  It truly is a trial and error type thing.  They start out with doses of medicine and then adjust them up and down to try and reach known ranges where kidney rejection is avoided and her body can still function.  We have found the staff here at Rainbow Babies and Children to be totally incredible.  The docs, surgeons, nephrology team, nurses, and everyone behind the scenes to be competent, friendly, professional, and encouraging of parental input.  I could not have imagined a better experience.  A couple of the docs don't possess the best bed-side manners, but that can be overlooked by their competence in their field of expertise.  We are thankful to all of them.

Finally, a little lesson in being selfless.  Jesus stated in John 15:13

Greater love has no one than this: to lay down one's life for one's friends.

Wendy Killian has lived out this principle for Nicole.  No, Wendy did not die in the process of giving Nicole a kidney to help her live.  She could have.  Titia and I are well aware of that risk and I am certain that both Stu and Wendy were aware of that risk as well.  It does happen.  However, I do not doubt that the love of God working in this woman would have permitted her the grace to do so if that is what Nicole needed to live.  I totally believe that to be true.  Look at what she said above....she was humbled to play a part in this miracle.  The true miracle of this transplant so far has not been an improvement in kidney function but a demonstration of the radical love of God.  What reaches has God made to demonstrate his love for us, his children.  Creation, life, breath, Himself, His Son, the death of His Son, and the everyday miracles that we take for granted.  We are called to demonstrate this radical love in our own life with the ultimate sacrifice being to lay day our lives for our friends.  If I would have seen nothing else in my life other than this transplant from a humble teacher to my daughter then I would have seen enough to know what true love is.  Thank you does not seem sufficient.

For His Glory,
Brian

Closer to Home

Nicole is resting in what we hope is her final room here at Rainbow Babies and Children.  She was moved out of ICU around 5:30pm today, Thursday, and into a regular room.  They are saying that if things progress as well as they have been then she could most likely go home on Monday.  That would be fantastic as far as I am concerned.

Everything continues to look great for Nicole.  Her kidney functions continued to improve today and everything is looking fantastic.  There was a bit of a hiccup in the transition to her regular room.  She tried to eat a little bit of pizza and ice-cream right before the move and that didn't sit too well with her because some of her meds were changed at the same time and then she had to get up and be transported by wheel-chair to the 5th floor.  That was just too much for her little body to take and she ended up throwing up her dinner and all the med's just as we got to the new room.  However, I believe that is just a little bump in the road to coming home.

Wendy also has seen some major improvements today.  She has not been sick for over 12 hours now and she has been up and about.  All and all this day was not too terribly exciting and that is just the way that we like.  Basically, Wendy and Nicole are one step closer to being home.

Thanks to all of you for your continued thoughts and prayers.

For His Glory,
Brian

Recovering

As I left Nicole's room to write this blog Nicole was sitting up in her bed and coloring a Hello Kitty coloring book that Wendy got her.  She is starting to get squirmy, laugh a little bit, have color in her cheeks, and be the antsy little girl that we all love.  She is so precious and beautiful.  To realize that her new kidney, SID, is working is an amazing thing!!  It is so incredible as a father to see your daughter come back to life.  There is still a lot of recovery to go, don't get me wrong, but I feel a corner has been turned today.  She has more pink in her cheeks then she has had her entire life.  What is her future going to be like?  Are things going to get easier for her in school?  Are the things that she struggles with going to get easier?  A million questions go through your mind as a parent.  For today, though, it is success and success.  That is what I feel.  Really, the update for Nicole is that things are better than we all could have expected!!

Titia and I made the walk across the hospital again this morning to see Wendy.  That is one of the coolest things ever.  Words cannot express what this whole experience has been like.  It has been terrifying and exhilarating at the same time.  To see Wendy and Nicole start out in the same prep room, wheeled out one at a time, and then placed in separate rooms across this mammoth hospital to recover is just an awesome thing to experience.  As I walk through these halls it gives you time to reflect a bit.  Sometimes life is not so much about the destination as it is the journey.  Sometimes, I believe, God wants us to learn something along the way.  There are times in our life when we cannot just run from problems but just run at them and embrace them.  Sometimes we just have to put the full weight of our existence into a struggle and ask, "What am I supposed to learn from this?".  If we don't learn something from our experiences then what is the point of them?  This is most definitely one of those times of learning and my head is absolutely swimming from things that I can learn.  I am learning from Nicole to be strong and determined.  I am learning from Wendy to be compassionate, empathetic, self-sacrificing, and an everyday super-hero.  I am learning from the vast host of people that have contributed and helped us that sometimes you have to get off the side-lines and get involved in the lives of people that you may not even know that well.  Sometimes you have to take a chance and go out on a limb with your emotions.  I have learned from the news media that people still do want to read and watch positive, up-lifting stories.  It has taught me faith, hope, and love.  And the greatest of these is love.  It has taught me that God continues to be faithful in life despite my oft unfaithfulness.  Should I go on?  The moral is, throw your head back and embrace what today is giving you and learn from it.  What does God have for me today because tomorrow has enough troubles of it's own.  I believe that is the way Jesus would have us think about it.

In the meantime, what are the struggles today.  Nicole has been improving rapidly, as we had hoped and prayed.  Praise God!!  However, Wendy is going through some struggles.  Her diaphragm may have been bruised in the surgery and it is causing her some breathing problems.  Her nausea and dizziness have persisted to some degree as well.  They are giving her some medicine to reduce the inflammation and hopefully that will make deep breathing easier.  Pray that she recovers from this quickly.  This is one of those times that it is difficult to be a recipient or the parent of a recipient.  If I were king for a day I would wave my wand and Wendy would be instantly recovered and on her way home.  That seems the fair and just response.  But, as you all know, I am not king.  I am just the dad of a beautiful 8 year old that received an amazing gift from an amazing woman.  So turn your requests to the real King Jesus and ask for his blessing of recovery upon Wendy and what she is struggling with today.

Regardless, may Nicole, Wendy, Stu, Titia, and even you as you read this blog embrace today for what it has and learn what the lesson is.  Once learned, you will be wiser for the wear and more useful for God's purposes in your life.

For His Glory,
Brian

P.S.  One final note, one great benefit from all of this is that I am getting to know Stu Killian better.  He is just my type of friend...a strong, speak your mind, type of guy.  No political correctness with Stu.  I like that and respect that.  I guess that is what you get with an retired military guy.  When asked what he thinks about Wendy giving a kidney his typical response is "Wouldn't you do the same thing?".  In Stu's mind, there is the right thing to do and there is the wrong thing to do.  This is the right thing to do in his mind.  I am proud to call this man a new friend of mine!!

SID is Working!!

As I wrote my previous post Nicole was in surgery.  We starting receiving regular updates shortly after I completed the previous blog as to the success of the surgery.  "SID", Nicole's pet name for her new kidney from Wendy, was successfully placed into her body.  She was finally stitched up and placed on local anesthesia.  It was over.  After all of the days, months, and years a new kidney was finally placed into Nicole.

She was wheeled by the waiting room on her way to the ICU around 4:30pm, a full 7 hours after being wheeled back for surgery.  She looked great.  She was asleep, but she looked great.  She would not wake up as we called her name and kissed her gently on the cheek, but she looked fantastic to this father.  You know that when you release your child to surgery that there is always a chance that something could go wrong.  There is always a risk.  So just to see your child again alive, in any condition, is a blessing.  This case was a double blessing because I knew that "SID" was in her body and functioning.

It was a bit of a wait, but we finally got to see Nicole in the Pediatric Intensive Care Unit (PICU).  We got to see the scar, the wires, the tubes, the ports, and everything else that is connected to her.  But most importantly, we got to see the urine bag from her catheter was full.  The "fellow" (doctor) in charge of Nicole informed us that they we consider 20mL a "good" urine output from SID.  In the first hour she was in the PICU Nicole produced over 200mL of urine!!  SID is working!!

Nicole in the PICU with my brother and sister, Brad and Terri, who made the trip from Florida



The doctor informed us that the first 24-48 hours after the transplant are the most critical.  The body is grafting in the new kidney and the urine output and the meds are administered and monitored very closely.  So many things can go wrong.  Our prayers are that she passes through the first 48 hours and everything is still OK.

Right now as I write Nicole is watching Finding Nemo and is looking great.  Her urine output continues to be fantastic and everything is looking fine.  Our only concern is that her blood pressure is running very high at 150/80 even with blood pressure medicine that was given an hour ago.  That is a problem that needs to be watched.

Finally, we went and visited Wendy this evening.  She looks amazing and is doing great, except for some problems with nausea.  The anesthesia has caused her some problems with nausea and the medicine being used to fight this is making her extremely tired.  Regardless, she looks fantastic.  All Wendy wanted to know about was how Nicole was doing and how SID was working.  She is an amazing woman.  As Titia and I walked back to Nicole's room we talked about what an amazing woman Wendy is.  This woman has a truly compassionate heart a mile wide.  Her compassion is real.  This sort of radical love cannot be faked.  As she sits there in pain and endures intense nausea it is a reminder to me what a huge sacrifice she has made for the life of Nicole and how graciously and humbly she has done this.  As she has said herself...she is a wife, a teacher, and a mommy.  However, I feel inclined to add that she is also a compassionate, self-sacrificial woman that has changed the life of my daughter.  As I told a group of strangers in the PICU waiting area that was interested in Nicole's story...Wendy Killian is now part of our family and deserves the best piece of turkey at our Thanksgiving table :)

Keep praying, but for now...SID is working!!

For His Glory,
Brian

In Surgery

Titia, Nicole, and I came up last night and stayed at a Hampton Inn just outside Cleveland.  It was amazing because total strangers continued to show support to our family.  Titia went to get Nicole a drink and a total stranger offered to pay for Nicole because he had apparently seen the story on TV.  Just amazing.

We woke up at 4:30am to get ready.  Nicole woke up pretty easily and even seemed a bit excited about her big day.  We left the hotel around 5:30am and made the short trip to Rainbow Babies and Children Hospital across town.  We checked in at 6am.

Wendy, her family, and her pastor arrived at the waiting room shortly after we did and after a bit of a reunion things settled in.  Fox8 and the Mansfield News Journal came as well and then things got a bit more exciting.  The Killian's pastor was kind enough to gather us all together and pray for Wendy and Nicole.  It was comforting to bring the surgery before the Lord.

We only had a short wait and both Nicole and Wendy were called back for surgery prep.  It was amazing because both Nicole and Wendy were in the same room.  Side by side.  How appropriate.  Wendy has stood by the side of Nicole since the entire process began.  She is an amazing and humble lady.  We are so, so grateful and I know that Nicole will be as well once she understands.  I didn't realize what a comfort Wendy was to Nicole until Wendy was wheeled back for surgery at 7:40am.  Nicole asked at least 5 times where Wendy was and she stated very clearly that she wished Wendy was still with her.  I believe that a beautiful bond has been built between Wendy and Nicole.  Nicole may not fully comprehend all that is going on but she does know that Wendy is giving her a kidney and that it is a big deal.  Here is a picture that pretty much sums up the experience of having Nicole and Wendy in prep together.  Beautiful and Amazing!!!

From 7:40am until around 9:15am Nicole kept herself busy by coloring, watching a video, and talking with us.  We also spent some time talking to her younger siblings, Katelynn and Caleb, via FaceTime.  They are staying with the Reel's and Tammy was more than happy to chat with us.  That was a great comfort to Nicole.  Nicole handled everything very well and was in good spirits until she was wheeled back.  When they told her it was time, fear came on her face.  She reached out her hand towards us as she wiped the tears from her eyes.  My eyes filled with tears.  It is an amazingly out-of-control feeling to watch your child being taken to surgery.  It would be easy to say that her well-being is in the hands of a bunch of strangers, doctors, and hospital staff.  The reality is that her well-being is in the hands of God, as it has been since the day she was conceived (and before she was born, really).  Nothing is by chance and nothing is out-of-control.  It just feels that way to me right now.  Both Nicole and Wendy are in surgery as I write and I am sitting in the hospital cafeteria comforting myself with writing.  I have found that writing is very therapeutic to me.  I think sometimes just putting down what you are feeling helps.  Expression, it is in the human heart to be certain.

Hopefully soon we will receive an update on how both Nicole and Wendy are doing.  When I do, I will write.  In the mean-time, I appreciate your thoughts and your prayers for both Nicole and Wendy.

By the way, the outpouring of love has continued as there are a number of people here at the hospital.  Family and friends have graced us since the day Nicole was born and continue to stand by our side.  Thanks to all of you.

For His Glory,
Brian

Surgery Scheduled for Tuesday

Well, the day is finally approaching.  Nicole's kidney transplant is scheduled for Tuesday in the morning.  Both Wendy and Nicole need to be at Rainbow Babies and Children hospital at 6am.  We have all known that this is coming since the very early stages of Nicole's life.  Someone, it still all seems surreal.

The outpouring of love from friends and community has been extremely overwhelming.  Yesterday morning Mansfield Christian School (MCS) had a school wide prayer rally to pray for the surgery and to let the students know what was going on.  It was very encouraging and much appreciated.  Last night MCS also hosted a fund-raiser to help cover expenses for both the Killian's and us.  Volunteers served pasta, bread, salad, desserts, drinks, and so on.  It was incredibly well attended and we were just blown away.  Thank-you!!  There were so many people working behind the scenes that it would be impossible to remember and name them all.  However, I would be remiss in not giving a big shout out to all of them and thanking them for their genorosity and love to our family.  You know who you are!!  There has also been a benefit fund set up at Richland Bank for both families as well.  Titia and I have had nothing to do with any of these activities and it has all been done by individuals that feel motivated to serve because of the love of God in their hearts.  What a contrast this is to the events experienced this week in Boston!!  At least in our lives we can see the profound difference between the actions of individuals motivated by the love, mercy, and grace of God compared to actions motivated by hate.  I hope that is obvious to everyone.

With the surgery coming Tuesday we are asking individuals to begin to pray for the surgery and the recovery of both Nicole and Wendy.  I have been asked on multiple occasions for specific prayer requests so here they are....

*  Wendy will undergo surgery first to remove her kidney.  Please pray that this process is free of complications.
*  Pray that the placement of the kidney in Nicole is complication free and that the kidney starts functioning right away.  There is a non-trivial percentage of kidneys that just refuse to function once transplanted.
*  Once the kidney is placed in Nicole all of the viruses that Wendy has been exposed to but Nicole has not will immediately infect Nicole.  These include EBV, CMV, and so on.  There are many complications that can result from these viruses.  Pray that is not the case and that Nicole's body can fight them off without issue despite being on a ton of immuno-suppressants to help the kidney not be rejected.
*  Pray for the quick recovery of Wendy.  She has been such a blessing to our family!!
*  Pray for Wendy's classroom and her students and for all of the individuals stepping in to fill the void at the school.
*  Pray for the quick recovery of Nicole.  It's going to be hard to keep her down once she starts to feel great from having a fully functioning kidney!! :)
*  Pray for God's blessing on Mansfield Christian School and all the individuals that have stepped up to support our families.  We are blessed by God to bless others and this has been fully experienced by both of our families at this time.  Thank God.
*  Pray for peace for the families standing by during the surgery.
*  Pray for the safe travel of family members to and from the hospital.

Your prayers are coveted at this time.  We know this entire process is in the Lord's hands.  I was asked by a reporter yesterday how I was doing and if I was nervous.  I am not nervous.  I know that since the day our gift Nicole was born that her life has been in the Lord's hands.  She was an answer to 10 years of prayer and none of this is an accident.  Have you ever been to a water park with a "lazy river"?  A lazy river is where slackers sit on an inner-tube and just float down a concrete stream and do absolutely nothing but rest and soak up the sun as the current pushes the inner-tube to it's final destination.  That's me.  Hebrews 4 states that there remains a rest for the people of God.  Hebrews 4 also states that in order to enter into God's rest we must cease from our own labors.  Well, there is absolutely nothing I can do about this situation.  It is in God's hands.  So, as a child of God, I am entering into His promised rest available in Jesus.  I am on my inner-tube and ceasing from my own labors, which are in vain any way.  The same Jesus that has saved me has this entire situation in His hands.  Regardless of how things turn out, I know it is in God's hands...so why worry.  Rest or worry....rest or worry... rest or worry....I think I will choose rest!!  I would ask you to pray, but not worry!!

My intent is to update my blog the day of the surgery in order to keep everyone up to speed as to what is going on.  Once again, thanks to all of you that have prayed with us and shared in our journey.  Many of you have been praying for Nicole even before she was born.  I cannot tell you all how comforting that is for us at this time.

For His Glory,
Brian