Thursday, May 26, 2011

Giving Thanks in All Circumstances

Two weeks has passed since the last blog entry and there is a lot of good news to report.

At the time of the last entry Nicole was extremely tired and not eating.  She continued to spiral into the weekend and reached a bottom on Saturday, May 14th.  (May 14th just happens to be my birthday for those of you who wish to send me a belated birthday gift/wish J.)  She was pale, extremely tired, and unable / unwilling to eat or drink anything.  She had reached the point where she was gripped with fear with the thought of eating or drinking.  Specifically, she was afraid of the pain associated with swallowing.  This fear led to inaction and her inaction was making her extremely sick.  So how do you get a kid to eat or drink when they are gripped with fear after you have tried everything?  Well, Saturday afternoon I walked into her room to find her lying on the floor covered with a blanket.  She was very sick, it was obvious.  I lay down next to her and began to talk in my most soothing daddy voice.  (You dad’s know what I am talking about.)  I decided that the approach I would use, though not my first or favorite, would be to conquer her fear with fear.  I informed her, in that soothing daddy voice, that if she did not eat or drink that she was going to have to go back to the hospital.  This was not a lie.  She sat up.  I repeated myself once again in a little bit more serious voice only with the small addition that she would most likely have to get another “pokey”.  She stood up and began walking downstairs.  I gave her a glass of ice-water and asked her to drink every drop.  She did.   I made some chicken noodle soup, puréed it into broth, and spoon fed it to her all the way to the bottom of the bowl.  This continued all the way through the remainder of the weekend and on into Monday.  The fear approach, though not my desire, worked.  I felt like I was mentally manipulating Nicole.  However, sometimes desperate times call for desperate measures.  The important thing was the nutrition she was receiving.  Mid-week, and Nicole was nearly back to normal eating and drinking everything in sight.

Since the above, Nicole has improved drastically.  She is already eating better than I have ever seen her.  She talks more, her speech is drastically improved, and her hearing is definitely improved thanks to the better sinus drainage.  She just had a doctor’s appointment today and she does not even need hearing aids!  Praise God.  She still has some hearing loss, but not enough to justify the hearing aids at the present time.  Her nephrologist also stated that she is doing wonderful.  All of her blood work is fantastic and she is at full strength.  We can once again carry on with the tissue matching.  We will go in Wednesday of next week, perform blood work, and then if the results are still OK then we will perform tissue matching with the next two potential donors.  The next two to be tested are Tiffany Smith, Titia’s niece, and Krista Ruska, a potential donor from Florida that we have never met but has felt led to give of herself on behalf of Nicole.  (Thank you Tiffany and Krista!)  Pray that Nicole’s blood-work goes well so that this process can indeed continue.

So as of right now, it is all good news!

Nicole 05/26/2011.
No ear tags and scars on her ears / neck from the removal of her branchial cyst and ear pits.  Isn’t she cute!

Though the process of going through tissue matching, kidney transplants, and other smaller surgeries is absolutely no fun and a great test of faith, things could always be worse.  This past month I was introduced to a wonderful family of faith from Washington with a little boy, Endurance (what a great name), that required a rare and risky heart surgery.  This family uprooted their entire family to come to Columbus, Ohio to have the surgery performed.  There were not a lot of surgeons in the nation who were even willing to perform the necessary procedures because of the associated risk.  The baby Endurance initially survived the surgery but passed away shortly thereafter.  The Lord gives and the Lord takes away, blessed be the name of the Lord.  Endurance ran his race, fought a great fight, and now has an enduring peace that will last an eternity.  I am not sure what this family is going to do now, but I do know that their faith rests 100% in the Lord.  It was a great privilege to meet them and it was also very inspiring to my faith.  As I said, our situation, though challenging, seems small compared to what this family has gone through.

I believe there are sometimes in our life that it is necessary to stop, reflect, and be thankful for our situation, regardless of what that situation is.  We may believe that it is bad, but remember, things could always be worse.  There are some peoples moccasins that I would not want to walk in for a mile.  Mine are just fine Lord.  Thank you Lord for giving our family the opportunity to bring glory to your name through Nicole’s kidney transplant!

1 Thessalonians 5:18

18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

For His Glory,

Friday, May 13, 2011

Hot Fudge Sundae and Sprite

The house needed work done, the other children needed my attention, plumbing and plants needed my attention at the aquaponics greenhouse, and I needed some rest.  Sip, lick…2 minutes…sip, lick, sip…3 minutes…sip, lick…2 more minutes.  This went on for quite a long time at McDonalds as Nicole alternated between playing with her Happy Meal Chinese piece of junk toy and sipping on her Sprite and taking her spoon and licking some of her Hot Fudge sundae.  Isn’t it funny how when we are where we should be, doing the things that we should be doing, our minds drift off to the other things that we could be doing at that moment.  Where is the focus?  Priorities!

Nicole’s recovery from her surgery took off at a rapid pace but about Tuesday of this week things hit the skids.  She stopped eating…I mean STOPPED eating!  Titia even stooped to an all-time low.  She called me in disgust at her own purchase.  Corn-dogs.  That’s right.  Corn-dogs.  A pig wrapped in a blanket all geared up to give it’s next victim some strange disease.  That didn’t work.  Soft vienna sausages, bacon, hotdogs, spaghetti, mashed potatoes and gravy.  You name it, we tried it.  She just would not eat.  Drinking.  No problem, thankfully.  Nothing to eat but a bite here and a bite there.  Definitely not nutrition that would restore her strength.  That’s for sure.  Things got even worse yesterday when Titia called me and told me that Nicole had a fever of 102.  Titia called the doctor and he told her that it could be a secondary infection that can hit after the scab falls off on her tonsils.  Oh, I see.  A secondary infection.  Great.

So when I got home from work on Thursday there Nicole was laying on the chair watching VeggieTales Bad Apple for the one-millionth time.  (How many times can you hear the song Temptation without going insane?  That is the real question.)  After wandering around the house aimlessly for awhile I decided to look for Nicole and bribe her with McDonalds.  I found her in her bed laying down for the night.  It was only 6pm.  She is so weak.  She seems so frail at times and I can’t help but wonder if “this” is how she is doing with a smaller surgery, then how will she do with a kidney transplant.  It makes me worry.  Worry, a subject for another blog.  I leaned over her bed and asked her if she wanted to go with Daddy to McDonalds to get a hot fudge sundae.  I knew if the hot fudge sundae would not work then nothing would.  She loves them!  Afterall, what’s not to love.  Heavily processed ice-cream, whip-cream, and hot fudge.  The perfect combination.  She smiled at me, her head still hot with her fever, and climbed out of bed.  It worked!  We made the 10 minute trip to McDonalds, purchased the hot fudge sundae, along with a Sprite and some Non-Chicken McNuggets (we all know why the word non is in there) and proceeded to sit down.  Sip, lick…3 minutes…lick, sip.  She took forever.  I mean, forever.  This was where I needed to be.  Nicole and I at the local grease pit trying anything and everything to get her to eat something.  Anything.  It was taking so long.  I had other things to do.  Other responsibilities.  A wife, other kids, home chores, a greenhouse to attend to.  You name it, I could have been doing it.  Outside the day was warm and the breeze lightly blew.  The breeze reminded me of the Lord.  Why, you might be asking yourself.  Because in scripture the wind is symbolic of the Lord’s Spirit.  His invisible presence and power in our lives.  Something we think about so very little, but without it our lives would be miserable.  The wind.  The Lord.  Peace.  Rest.  Quietness.  As the wind blew I quieted my mind from all of the other distractions, thought of my little girl, and realized I am not omnipresent like the Lord.  I cannot be all places at one time.  I am limited by this flesh that I am trapped inside of.  And because of that choices need to be made.  Where am I going to be now?  What am I going to do and how am I going to spend my time?  The question is not what COULD I be doing.  Instead the question is what SHOULD I be doing.  What is going to have my focus, attention, and energy.  At this moment, as the wind stilled my thoughts, I knew my attention needed to be with Nicole.  One of my 4 children who are all my “heritage from the Lord”.  Nothing else mattered except the little girl with the fever sipping her Sprite and licking the ice cream from her spoon.  (The non-chicken nuggets almost caused her to throw-up…so I ate them J)  After we came home she curled up on my lap, snuggled in nice and close, and said, “Thank you daddy”.  Nothing else needed to be said.  I knew that, at least for last night, the correct decision had been made.  My time was spent wisely.

Take a few minutes to ponder these inspiring words from Psalm 139.  They will quiet your soul, give you rest, and help you to remember that the Lord is always near.  Today, even with all you have to do, you can rest.  So rest.

Psalm 139 (New International Version)
 1 You have searched me, LORD,
   and you know me.
2 You know when I sit and when I rise;
   you perceive my thoughts from afar.
3 You discern my going out and my lying down;
   you are familiar with all my ways.
4 Before a word is on my tongue
   you, LORD, know it completely.
5 You hem me in behind and before,
   and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
   too lofty for me to attain.
 7 Where can I go from your Spirit?
   Where can I flee from your presence?
8 If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
10 even there your hand will guide me,
   your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
   and the light become night around me,”
12 even the darkness will not be dark to you;
   the night will shine like the day,
   for darkness is as light to you.
 13 For you created my inmost being;
   you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
15 My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.
17 How precious to me are your thoughts,[a] God!
   How vast is the sum of them!
18 Were I to count them,
   they would outnumber the grains of sand—
   when I awake, I am still with you.
For His Glory,

Friday, May 6, 2011

Surgery Results…and…”It is More Blessed to Give than Receive”

The doctors, nurses, specialists, “life-skills” coordinator, Titia, and I all surrounded her bed.  All the while Nicole clinched tight to her stuffed bunny.  They wheeled her off, mom walking closely behind the bed, while I watched.  I half expected Nicole to cry or go into some sort of hysteria, but the opposite occurred.  It was like she went into self-preservation mode (almost stoic) as they prepped her for surgery.  This continued all the way into the operating room.  Not a sound.  They put the mask on her and she did not make a peep during the 20 seconds she waited to drift off.  Her eyes rolled back in her head as she began the almost 3 ½ hour surgery.

3 ½ hours; the longest 3 ½ hours of my life as we waited patiently in the waiting room.  We knew there were risks.  The doctor had warned us that because of her kidney there could be complications, especially with maintaining her blood pressure.  The nurses asked us ahead of time about the possibility of a blood transfusion.  This would severely complicate the kidney transplant preparations.  We prayed that none of this would be required.  Thank God is wasn’t.  Everything was fine.

They first removed her tonsils, then her adenoids, followed by the ear tags, ear pits, branchial cyst, and finally the insertion of tubes in her ears.  The surgical team stated that she had “thick, thick” fluid on her ears (the words of the docs).  She is hearing noticeably better already.  That is a big Praise the Lord!  Her branchial cyst did not extend all the way up into her throat and that made the removal a little simpler.  The ear pits were also not that deep.  So the surgery went quite well.  As good as could be expected.  It was still a very long time!

When we finally got the call that she was done and ready to see us we were delighted to see her clutching a popsicle in her hand…but she was not smiling.  As we approached the bed she whimpered as if to say, “Why did you let this happen to me?”.  I don’t seriously think that is what she was thinking, but it was what I was feeling nonetheless.  I could not help it.  It is hard to intentionally send your little princess into a situation where pain is going to be the result, even if that is what is best or necessary in a situation.  (I had a twinge of guilt.  I don’t really know why.  It just is what it is.  I presume there is going to be more of this to come.  Oh well, I guess I had better get accustomed to it.)  She quickly fell back to sleep, still holding her popsicle as it dripped down her arm and onto the bed sheets.  30 minutes later she was in her room.

She recovered well that first night, at least until the administration of some necessary medicine.  She threw it up.  Then they had to check her kidney function and a “pokey” was required which resulted in her getting completely worked up and throwing up her medicine again.  The surgery took its toll on her kidney function.  Her creatinine levels increased from 1.8 to 2.0 during the course of the surgery.  This was most likely due to being dehydrated, or at least low on fluids.  It was not altogether unexpected, but the reality is that if these levels do not bounce back it will only accelerate the necessity of the kidney transplant.  Another pokey in the morning reconfirmed that her kidney functions remained in the weakened condition.  They pushed fluids through her IV to no avail.  We shall see if the levels returns to their prior surgery levels.  I pray they do.

Nicole is now home recovering.  She is starting to eat a little better and return to some sense of normalcy after getting some much needed rest.  It has been a hard week…one of many hard weeks for Nicole and us, I am afraid.  Tiring.  Very, very tired.  Especially Titia.  Isn’t this the beauty of having children though?  You give of yourself for the good of your children and in doing this you learn that it is “more blessed to give than receive”.  After all, if you are the one giving then it means that you have something to give.  That is the blessed position to be in.  I will repeat that: is “more blessed to give than receive”.  After all, if you are the one giving then it means that you have something to give.  That is the blessed position to be in. 

If you are the one receiving it means that you are most likely in the position of weakness.  This is not the enviable position, though sometimes necessary.  It is the ebb and flow of life.  Sometimes we can give, and should.  Sometimes we must receive.  Let us receive with thankfulness.  Better late than never in learning some of life’s valuable lessons.  Thank goodness the Lord is patient with my/our incessant selfishness!

Thank you for all your thoughts and prayers.  It helped sustain us during this week and your continued prayers will be coveted as we press forward.

For His Glory,