Tuesday’s Surgery

Well, Tuesday is Nicole’s surgery for her ear pits, branchial cysts, ear tags, adenoids, and tonsils.  Surprisingly, Nicole is excited about it.  Oh, to be a kid again!  She really has no idea what is about to happen, and praise the Lord for that!  (The divine provision of innocence and trust in children is something to be modeled in our lives as adults.)  What I am really afraid of is the post-surgery let-down and questioning about what has happened and why we allowed it.  I am dreading that.  I distinctly remember Nathan going in for surgery so big and brave and coming out feeling violated.  I cried when he went in and I cried when he came out.  I expect nothing different this time with Nicole.  I cry at Charlie Brown’s Christmas, so what do you expect?  Kind of pathetic, actually.  I am sure she will do fine.

Titia went to the library and got her a book on going to the hospital.  It talks about packing your bags, including the all important pajamas, blue teddy bear, hair brush, tooth brush, and so on.  Notice the teddy bear has to be blue!  Nicole will have no other.  When a 6 year old goes to the hospital for surgery and an overnight stay and wants a blue teddy bear then you get her a blue teddy bear.  That is all there is to it.  She also keeps talking about how the doctor is going “to remove these”, as she tenderly points to her ear tags.  I will miss them, as I have said before L.  Oh well, I will get used to Nicole without the ear tags.

On a more serious note; this is a big deal.  Sure, many kids have their tonsils and adenoids removed.  I know that.  But this is a much longer surgery because of the other things that need to be done and we have been told that it will be close to a 3 hour surgery.  Plus, it is the surgery before her kidney transplant.  Nicole is going to have an incredibly difficult year.  There is no doubt about it.  Any surgery is no small matter under any circumstances but this is anything but minor as far as I am concerned!  My little girl is going to be cut on and that is enough to send me head-long into “protect my daughter mode”.  Tonight she curled up on my lap and said, “I am daddy’s girl”.  THAT’S RIGHT!  She is a daddy’s girl and praise God for that.  That is the way it is supposed to be.  One of my roles as a father is “protector”.  All I could think about as she said that was how I wanted to protect her from every bit of pain and hurt that she might ever go through.  I know this is unrealistic, but nonetheless it is my desire.  I desire this for all of my children.  I believe many men have abdicated their God given roles as men.  This is the paramount calling in my life; ministry and service to my family.  Protector, provider, teacher.  These are divinely appointed tasks and I take them seriously.  My dad used to have a saying that went something like this as he nostalgically remembered the past, “Yes, son, that is back when men were men and women were glad of it”.  J  I love it.  Simple, yet profound.  His point was there was a time in our past when men were masculine and the ladies in the world were glad there was a difference between them and the men.  Not everybody strove to be equal in every way and God-given differences in people were embraced instead of becoming points of division.  Men/Women, Black/White, Jew/Gentile, Rich/Poor.  I could go on.  The point is to accept who you are, how you were created, and stop trying to be someone or something you simply are not.  You were made who you are for a reason.  A divine reason.  Embrace it.  Think about this one for awhile and you might be surprised where it leads you.  Anyway, I am a man.  My dad taught me to walk road-side with my wife and daughters when on a side-walk.  Why?  Because in that position I could protect my family from potential road hazards.  He taught me to shoot a gun in self-defense and for the protection of my household.  He taught me to never, under any circumstances, to ever strike or hurt a girl under penalty of death (and a very large switch from the tree).  He taught me to open doors, pull out chairs, and every other act of practically dead chivalry that you can imagine.  Silly?  I don’t think so!  I think it is important.  Very important.  And just as the saying goes, “women were glad of it”.  I think it is still this way.  Maybe I am old-fashioned.  Who knows?  However, I do know this; my daughter is going in for surgery on Tuesday, Lord willing, and I am going to be there at the hospital.  Just being a dad.  I would be no where else in the world.

Nicole, my prayer for you is from Number 6:

²⁵ the LORD make his face shine upon you
   and be gracious to you;
²⁶ the LORD turn his face toward you
   and give you peace.”’

The Lord will have mercy to a thousand generations and upon Nicole on Tuesday.  Thank you for your continued thoughts and prayer for Nicole.

For His Glory,
Brian

DECISIONS, DECISIONS

Two updates today; our kidney transplant tissue matching results and Nicole’s unplanned surgery for her tonsils, adenoids, branchial cysts, ear pits and tags.

Tissue matching results

Two weeks ago Titia and I went in for a blood draw, along with Nicole, to see if we were a potential match to donate one of our kidney’s to her.  They drew 4-5 vials of blood from us and 10 from Nicole.  We just heard the results yesterday.  Titia and I are both potential matches, although Titia is a “better” match than I am.  Tissue matching involves testing the genetic match between the potential donor and the recipient (Nicole).  According to the site http://www.aakp.org/aakp-library/kidney-transplant-matching/ blood and tissue proteins are part of what make us the unique creations that God has designed us to be.  (Of course, they did not give the credit to creator God, but I will.  If I give the site credit for the information then certainly I must give God credit for being the creator of all life J.)  These proteins are called antigens.  The doctors basically identify the 6 different antigens in both Nicole and each potential donor to see how many of them match.  There are many, many different types of antigens but only 6 specific types are in each individual.  If two people perfectly match all 6 antigen types then that is considered to be the best possible match.  Interestingly enough, this occurs 25% of the time between siblings.  Unfortunately for Nicole none of her siblings are 18 years old or older and thus are not able to donate their kidney.  Titia and I are thankful in some ways that Nathan, our 15 (almost 16) year old son, does not have to make this decision.  But I digress.

Nathan with his girlfriend Shelby!

Titia matched 4 antigens with Nicole and I matched 2.  The higher the number of matched antigens the better the long-term outlook for Nicole and her kidney transplant.  A 6 on 6 match is best, 5 on 5 is next, 4 on 4 next, and so on all the way down to matching 0 antigens.  The immunosuppressive medicines have greatly improved over the years and they can even make a kidney work with someone who has 0 matching antigens.  However, this would obviously require a great deal more medicine with stronger potency.  This is not what we want for Nicole…the less medicine the better.  So basically both Titia and I are potential candidates, but Titia is a little better as far as the long-term statistics are concerned for Nicole’s success.

They also mixed our bloods together along with Nicole’s blood to see if her blood attacked our blood which would obviously be a problem for her body rejecting our kidney.  For both of us this test came up negative…this is good.  This means that her blood played nice with our blood in the sand-box. 

Nicole’s surgery

Since my last blog 2 weeks ago there has been absolutely no news regarding Nicole’s required surgery for her tonsils, adenoids, branchial cysts, ear pit and ear tags.  They told us two weeks ago that it would be scheduled in 1-2 weeks but it has now been 2 weeks and 2 days.  We have placed calls to try and determine the status but we have not gotten a return call so far.  The doctor seemed quite anxious to get this surgery over with so I am sure that we will be hearing something soon enough.

Nicole picking out her favorite pumpkin

 

Other news and a life application

After speaking with the transplant team this week they informed us that Titia and I need to prioritize who will be next in line to perform tissue matching.  There have been so many of you that have volunteered to be potential donors that we have to create a priority list.  What a rare and an amazingly good problem to have.  I know I have said it before, but those of you that have volunteered to donate a kidney to Nicole have blessed us so much that words fail me.  For those that know me best know that I am rarely at a loss for words.  J  It is true though.  I have asked myself over and over again if I would give up one of my kidneys for a friend or even for someone I have never met.  I would like to think I would, but I don’t know.  I am just being honest.  Your sacrifice is amazing.  We need wisdom.  Who is next?  Titia and I are going to look over the list of potential donors that we know about and pray about which one might be next.  We are seeking the wisdom of God and will be listening for his “still small voice” to guide us.  Please pray that we will hear clearly and that our will is pushed aside in favor of the Lord’s leading.  We do not know about every potential donor and the transplant office will not tell us because of privacy laws.  If you have contacted the transplant coordinators and done blood type matching but have not let us know then we do not know about you and thus you will not be given priority.  If you would like to let us know then privately contact us so that we may pray about you being next.  However, this is a very personal decision and you may not want us to know.  That is fine.

One cannot help but be amazed at the progress mankind has made.  We live incredibly sophisticated lives compared to our ancestors at the beginning of creation.  The Lord, in Genesis 1:26-28, gave Adam and Eve a dominion mandate when He stated:

²⁶And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

 ²⁷So God created man in his own image, in the image of God created he him; male and female created he them.

 ²⁸And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth.

Certainly, man has to a large degree taken dominion over the earth.  We understand physics, chemistry, the human body, mathematics, planets, nature, and so on.  We have sent people to the moon.  We send unmanned rockets to the far reaches of the solar system.  The entire genetic makeup of the human body has been mapped out and many diseases have all but been eradicated from the earth.  The life expectancy of man is increasing as a result of all of these advances.  It truly is amazing.  I truly believe that we are living in the last days of when a transplant from another will even be required as I have read about scientists growing organs using an individuals own tissues.  Of course, it would be a “perfect match” and would not be rejected because it would not be foreign to the recipient’s body.  How amazing would that be?  Just incredible.  My heart is wearing out so just grow another one.  Think about the possibilities.  It is really kind of amazing and kind of scary at the same time.  I could go on and on and on at the advances that mankind has made.  Truly we were made in the likeness and image of God…but there is a danger.  We need to remember a very important portion of scripture in Genesis 11:1-9…the tower of Babel:

¹And the whole earth was of one language, and of one speech.

 ²And it came to pass, as they journeyed from the east, that they found a plain in the land of Shinar; and they dwelt there.

 ³And they said one to another, Go to, let us make brick, and burn them thoroughly. And they had brick for stone, and slime had they for morter.

 ⁴And they said, Go to, let us build us a city and a tower, whose top may reach unto heaven; and let us make us a name, lest we be scattered abroad upon the face of the whole earth.

 ⁵And the LORD came down to see the city and the tower, which the children of men builded.

 ⁶And the LORD said, Behold, the people is one, and they have all one language; and this they begin to do: and now nothing will be restrained from them, which they have imagined to do.

 ⁷Go to, let us go down, and there confound their language, that they may not understand one another's speech.

 ⁸So the LORD scattered them abroad from thence upon the face of all the earth: and they left off to build the city.

 ⁹Therefore is the name of it called Babel; because the LORD did there confound the language of all the earth: and from thence did the LORD scatter them abroad upon the face of all the earth.

Mankind, from the very beginning, has sought to live life apart from our creator.  Why?  It truly is a profound question.  In this incredibly story Nimrod, the leader of Babel, along with mankind defied the Lord’s command to spread over the entire earth after the great flood.  Instead they organized into a city.  They built an economic system, government system, religious system, and so on all apart from God.  And with success, mind you!  I cringe, absolutely cringe, when religious leaders look at the success of their “church” and say things like, “Look at what is going on here, certainly God is blessing us”.  Why?  Do numbers, large buildings indicate success?  Maybe to man, but certainly not to God.  If these things meant success then God would have pretty much been declared a failure throughout all of history.  Are these leaders saying that man is not capable of amassing people to a cause without God’s blessing?  How ignorant.  What about Hitler?  Did he require God’s blessing.  Absolutely not.  What about Jim Jones and his cult that “drank the Kool-Aid”?  God forbid.  Mankind is competent and able without God to do almost anything apart from God.  After all, we were made in the likeness and image of God.  Look at the scripture above that I have underlined.  I will repeat it again here:

…and this they begin to do: and now nothing will be restrained from them, which they have imagined to do.

Look what God states here.  “Nothing will be restrained from them, which they have imagined to do”.  Half of the science fiction cartoons from the previous generation are now reality.  Is nothing restrained from man?  I don’t think so.  If we can imagine it, we can do it.  It just takes time and money.  But isn’t that the danger.  We can live out our entire life on this earth in complete and total defiance to our creator and spend an eternity separated from Him.  To what end?  What is the point?  To make a name for ourselves like our forefathers at the tower of Babel?  God eventually intervened and stopped them.  I would propose to you that the world is nothing more than a giant, defiant Babylon right now.  An entire global economic system, political system, and tolerant religious system is constructed and being completed right before our eyes….ALL WITHOUT GOD.  Or, should I say, all without the true God.  It is the spiritual Babylon of the book of Revelations and it is being fulfilled right now.  Don’t wait for some ancient city to be built, it is happening now.  The end of the book is now.  Do not be deceived.

So what does this have to do with Nicole’s kidney transplant?  Everything!  Titia and I are capable, on our own, without God of making decisions, going to doctors, and living every last second of our lives without our creator.  It would be our choice.  We would be no different then the thousands, millions, and yes, billions of people that do it every single day.  Would it work out?  Maybe…maybe not.  The rain falls on the just and the unjust alike.  Why guess?  Why make a single decision apart from my creator who knows me best and instead follow the broad road that leads to destruction at the end of it.  I don’t see the logic.  I choose to defy our modern day, religiously tolerant Babylon and to proclaim that I will not make my decisions apart from Him.  Who is next on Nicole’s tissue matching list?  I have no idea and neither does Titia.  We will find out from our Heavenly Father who will let us know.  Why?  Simply because we ask and submit ourselves to His will.  He loves us and does not want us to be in the dark.  I do not make blind decisions.  I am led, and happily so!  This entire process is in His hands.  I refuse to build my own little personal Babylon apart from God.

For His Glory,

Brian

P.S.  Two updates.  First, Nicole's surgery is now scheduled for May 3rd.  That was fast :)  Second, Titia's niece Tiffany is going to be the next one to be tested for tissue matching.  A lot changes in 1 night.

An Unplanned Surgery

The dreary weather sort of reflected the mood of the day.  We were anxious, I am going to be honest.  Titia and I drove to Cleveland in a dreadful, never ending thunderstorm.  Don’t get me wrong, I love thunderstorms.  But on Monday it just sort of seemed to fit the day.  The reality of Nicole’s kidney transplant seemed so real.  It is easy to talk about it but when the blood starts to flow through the tubes into the vials there is no getting around the reality.  Our miracle baby of 6 years ago is going to need a new kidney.  Maybe mine!

“Daddy is going to get a pokey first.”

“That’s right”

“Daddy don’t cry. You can get a band-aid and it will be all better”

“That’s right sissy”

I cannot tell you how often the brief conversation above occurred.  We had told Nicole early Monday morning that she was going to get a pokey along with Daddy and Mommy.  For the followers of this blog you know by now that a pokey is Nicole’s term for a shot.  She knows by now what a shot is.  In her anxiety she had decided that I, the daddy, would get the first pokey.  But I hate getting pokies, even at 43.  But I got it.  She wanted to see me (big, brave daddy J) get the first pokey and that would make her stronger.  Well, not so much.  It all was going according to plan until it was time for her pokey.  Putting Nicole in the chair by herself was a total bust.  She cried and thrashed about until the nurse suggested I sit in the chair and Nicole sit on my lap.  I put her two legs between my two legs and squeezed.  Her right arm was wrapped in my arms which were wrapped around her chest.  Her left arm was being held by a second nurse while the primary nurse searched for a vein.  I squeezed harder as the crying got louder.  First try.  Praise God the nurse hit the vein on the first try and out flowed the blood.  Vial 1, vial 2, vial 3, … several minutes passed by …vial 9 and vial 10.  As the blood flowed the crying got less and less and my grip on my baby loosened and loosened.  Don’t get me wrong.  She was very, very brave and I am very proud of her.  Who doesn’t want to avoid a big pokey like this at all cost and her coping mechanism is crying, talking, and flailing around.  It is what it is.  Titia followed Nicole with her 4-5 vials of blood and we were done.  Off the “kits” went to see if Titia or I are a match for Nicole.  We will see.  Thankfully, there are many more potential donors waiting behind Titia and I who may be a perfect match.  The more, the merrier.  The better the match…the less the chance of rejection…the less hardship on my girl.  It is all about her, as it should be.  We will keep you posted.

We went up the elevator to the “oto” guy.  Oto is Greek for ear.  Nicole has hearing loss as most BOR (branchio-oto-renal syndrome) patients do.  It has gotten so bad recently that we have to put Nicole directly in front of us, talk plainly and loudly, and hope she understands what we are saying.  We knew it was time to escalate the priority of dealing with the hearing loss.  After an examination, Dr. Arnold told us exactly what we knew…Nicole has hearing loss.  But we finally had a doctor that understood BOR and the priority that the hearing loss requires.  Nicole is going to require hearing aides but right now her hearing loss is being exacerbated by fluid on her ears.  Because her ears are formed differently they tend to hold a lot of fluid.  Her tonsils and adenoids need to be removed in order to aid in correct drainage of her sinus cavities.  This is something that we have some experience with because Nathan had his removed and it really, really helped him.  His eating improved, his sleep improved, and his breathing improved.  I know removing tonsils and adenoids can be an oft prescribed treatment and is thus a little controversial, but our experience with our oldest was positive.  What Dr. Arnold explained, pointing to the diagram of the ear and sinuses on the wall, made perfect sense.  Once the fluid is removed from ear, and constantly so, then and only then can a hearing aid with the correct properties be designed.  Otherwise, we would be compensating for hearing loss that is caused by fluid which is an ever changing factor.  That would create erratic hearing for Nicole which would defeat the whole purpose.

Nicole also has ear pits and a branchial cyst.  These “pits” are visible at the top of each ear and in her neck.  They are a source of constant drainage and potential infection.  They are quite common in BOR patients and along with her ear skin tags were the first signs that tipped off the E-N-T (ear, nose, and throat) doctors at Children’s Hospital in Columbus that Nicole had BOR when she was first born.  They are going to remove the ear pits and branchial cyst when she has her tonsils and adenoids removed because the immune system is suppressed so much to avoid transplant rejection that any source of potential infection must be removed.  While they are at it they are going to remove her skin tags as well.  Cosmetic reasons.

I have to be honest; I am struggling a bit with the removal of the pits and the skin tags.  Every time I look at Nicole and see these visible indicators of her condition I am reminded of her birth, her uniqueness, her special place in this world and in my heart.  She is an answer to almost 10 years of praying for a second child and I do not see these so-called imperfections as deficiencies but as a memorial of sorts to her incredible birth and to the awesome answer to prayer that Titia and I received.  I suppose other people may see imperfections, but not me.  I want to keep them…all of them.  However, I understand why they must be removed and their absence won’t change the reality of who my little girl is.  It just kind of feels wrong, if you know what I mean.  I will get over it, I always do.

Pray for Nicole, in addition to the road being traveled for a kidney transplant she now has to have a 2 ½ hour surgery in 2-3 weeks to have all of this done.  We were not planning on this, but here it is.  It is like I wrote last week in this blog, “stick in the water”, “stick in the water”, “stick in the water”.  I am repeating it to myself to remind me that each week is going to bring an unexpected twist.  Right on cue, we have an unplanned surgery.  Nicole is going to have to stay the night because of her kidney condition and thus this is not going to be an out-patient procedure.  This will make it doubly difficult and we may be calling on some of you to watch kids J.

Nicole has the grace and mercy of God upon her (a declaration of faith), but we still covet your prayers during this process.  Pray that these procedures go as smoothly as possible and that Letitia and I will have the wisdom to know how to prepare Nicole for this.  These things are never easy, but I am certain, with the Lord’s help, she will do just fine.  Ahead of time let me thank you for all of the thoughts and prayers.  I will keep you informed through this blog.

For His Glory,
Brian