Endures All Things

The dress was tucked away in a box among picture albums and quilts in a closet.  It had made the journey in a U-Haul from South Dakota to Houston three years before.  It had been packed onto the truck along with other evidences of young love.  There was a (locked) trunk filled with letters exchanged between my parents as teens.  Other boxes contained photos of their time together at summer camp or headed to the movies in Dad's car. There were yearbooks from the time of their first date, when Mom was just 15.  Dad enjoys telling the story of inviting her to a neighboring town for rollerskating...since he needed to go to the town anyway in order to pick up a tractor part for his father.  When Mom talks about that first date, she remembers being torn between wanting to skate, and wishing to sit beside Dad on the sidelines since he lacked skating skills.
When I visited my parents a few weeks ago, Mom lifted the dress from the box while Dad was in another room.  She was pleased to see that it hadn't yellowed, and stroked the lacy sleeves.  She reminded me that her mother had spent countless hours lovingly sewing this dress.  Mom wanted to see if she could fit into it, so slipped to her bedroom to try it on while I distracted Dad.  He was delighted when she emerged to surprise him.  We quickly decided that he should find a suit jacket so we could take pictures.  He disappeared, and returned not only with a jacket, but a shirt and tie as well. When he reached for her hand in an attempt to recreate a ring exchange, I witnessed one of the most touching moments I've seen.  The pictures don't show that Mom's dress didn't quite zip up the back.  You can't see that Dad was still wearing his gym shorts from the waist down.  The pictures simply tell of a love that bears all things, believes all things, hopes all things, endures all things.

Overflow With Hope

We have done our part.  We went to KU this morning to finish up the last requirements for transplant testing.  Jason nonchalantly watched a technician draw nineteen vials of blood from his arm.  I started feeling a bit woozy after I'd counted the first twelve.  We met with a different kidney doctor, and tried to address his various concerns.  Jason was feeling largely unconcerned at this time, since he was trying out one of the clinic's new remote control recliners.  They also did the planned ct scan of his abdomen, as well as chest and dental x-rays.

When the transplant committee met back in May to discuss Jason, we were told they'd decided to proceed with getting him listed.  We were under the impression that this would definitely happen once cardiology cleared him. It was disheartening to realize this is not the case.  We learned that the committee will be meeting again tomorrow to make a final decision.  His transplant coordinator should be calling us on Thursday with this news.  

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." (Romans 15:13)

Endurance

Several weeks ago, one of Jason's dialysis nurses decided to contact his KU transplant coordinator since we still hadn't heard anything.  She was told that we would be getting a phone call soon to schedule an appointment. When this didn't happen, his nurse suggested we contact Research Hospital to begin the transplant process there.  Research is the last option available in the Kansas City area.  We steeled ourselves to start over again, and signed up to attend the initial class on October 9th.  

When my phone rang this morning, I was rather surprised to see KU's number on the display.  Jason's coordinator said she'd like to schedule him for his last appointment.  Because of the way she worded it, at first I thought she was saying they weren't moving forward.  She went on to describe more about what the appointment would entail...labs, chest x-ray, pelvic CT, as well as meeting again with the surgeon.  Exhale.  It seems she meant his last appointment before being listed.  She wants us to come next Tuesday, October 8th. They had planned to use his test results from St. Luke's, but must have decided to repeat these few since it's now been more than a year since they were done.  We will hold off on Research for now.

Jason continues to feel well on dialysis.  His latest labs were very positive. He's never particularly enjoyed reading, but lately has been engrossed in anything he can get his hands on...from grocery store ads to Ladies' Home Journal, ha.  Our library gives away older issues of magazines, so I've been picking up Sports Illustrated each time I go.  Whenever he gets a hint about the date on commercials, he reminds us that his birthday is quickly approaching.  He normally asks how old he's going to be, so Eli and I have him guess.  So far he's always guessed the low 30's, although he's finally going to be 39, and will join me in the 40's soon enough.

"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy." (Colossians 1:11)

Live And Unplugged

I  woke early this morning to the sound of Jason's dialysis machine beeping. This is not an uncommon noise in our room.  The display read, "check patient line" so I asked Jason if he was lying on his line.  He ever so casually responded, "I'm not even hooked up."  I was instantly alert and possibly a bit panicked.  This is the reason I have slept so fitfully for the past five months. I've never been entirely certain what Jason might do during the night.  Until this morning, I've always woken up whenever he's tried to get up to use the bathroom. I've come to the conclusion that either (a) I was rather unconscious after a long week, or (b) Jason has secretly been developing ninja skills.
There's a procedure that needs to be followed whenever he is connected to dialysis in order to avoid contamination.  This involves hand washing, wearing a mask, hand sanitizer, scrubbing the catheter with a bleach solution for one minute, and never touching the end of his uncapped catheter.  Needless to say, Jason wasn't able to remember these steps before setting off on his journey to the bathroom.  We ended up going to the dialysis unit at the hospital so they could put a new sterile end on his catheter.  He is also taking an emergency antibiotic for two days to prevent infection.
When Jason went for routine labs last week at the dialysis center, one of the nurses suggested we contact Research Hospital about transplant since KU still hasn't followed up.  She also left a message with his KU coordinator in hopes of learning his status there.  If we decide to try Research, we would attend a class in early October.  They would then request his records from KU before deciding whether to proceed.  We are trying to be patient, and trust the answer will come at the right time.
Eli seems to have already settled in nicely at his new school.  There is a lightness in him as he strolls to the car after his day.  He is excited about playing basketball in October.  We are incredibly thankful that God once again provided exactly what was needed.
I lost a friend this week to leukemia.  Audra had been fighting valiantly for the past seven months.  Each night before I went to bed, I would read her daily journal entry on CaringBridge.  She made such a difference in my outlook on life.  She faced each new day with strength and grace, even as she endured unimaginable struggles.  She had an enormous impact on me, as well as countless others.  I am heartbroken for those who were closest to her, and pray they can find peace in the days ahead.
"Create in me a clean heart, O God, and put a new and right spirit within me.  Do not cast me from your presence or take your Holy Spirit from me. Restore to me the joy of your salvation, and grant me a willing spirit, to sustain me." (Psalm 51:10-12)

Audra...such a brave warrior

Shelter Me Safe

We were running behind as usual this morning.  By the time I'd unhooked Jason from dialysis, and coaxed him into the shower, I only had a few minutes for (much-needed) personal primping.  Eli was wise enough to perceive this wasn't the morning to argue his case about not needing a shower.  Once we were all squeaky clean and properly attired, it was clear we would not be punctual.
As we quietly slid into a pew, our song leader was just announcing the next song.  He requested that the sopranos sing the first verse, with each vocal part joining on the subsequent verses.  Since I've often longed for a lovely alto voice, and find the sound especially soothing, this pleased me.  As I heard the first strains of Nearer, Still Nearer, I felt myself unwind from life's uncertainties.
This is the song I've found myself turning to time and again in the past several months.  Whenever I feel overwhelmed, the lyrics provide solace.  I play it each time I begin to worry about the future of Jason's health. Even as life seems to be unraveling all around me, it never fails to comfort me. When I wake up in the middle of the night, and am unable to breathe while thinking about my dad, I repeat the familiar lines in my head until I fall back to sleep.

1. Nearer, still nearer, close to Thy heart,
   Draw me, my Savior—so precious Thou art!
   Fold me, oh, fold me close to Thy breast;
   Shelter me safe in that haven of rest;
   Shelter me safe in that haven of rest.

1. Nearer, still nearer, while life shall last,
   Till safe in glory my anchor is cast;
   Through endless ages ever to be
   Nearer, my Savior, still nearer to Thee;
   Nearer, my Savior, still nearer to Thee!

http://kleinwood.com/annual-singing/2005/08/05/nearer-still-nearer

The In-Between

Still we wait.  I emailed Jason's transplant coordinator the day he received clearance from cardiology.  I was quite elated as I wrote the message since this had been the last major obstacle before he could be listed. She replied simply, "Yes, received the report yesterday, will review his chart this afternoon."  While brief, at least her message implied action and moving forward.  That was almost a month ago.  I reminded myself that she has numerous patients and responsibilities, so tried to wait for more information.
I managed to wait until last week to contact her again.  She answered that they were in the midst of moving to a new clinic, a couple floors down in the hospital, so hadn't been able to proceed.  She added that she should know more on Monday.  When I didn't hear from her on Monday, I decided to call and talk with her. She told me they are still in the process of trying to update patient records because of the move.  She assured me they would schedule Jason for another appointment at some point.
I truly understand there is a procedure involved, and delays are inevitable. I also know these months may make a real difference for Jason later on.  I know the realities of life on dialysis, and the risks involved.  We have been chasing after the possibility of transplant for nearly a year.  It is especially difficult to sit quietly and wait, knowing he is strong and healthy right now.
Meanwhile, Jason is thriving as he waits.  He has been feeling increasingly energized and perky.  His new favorite phrase this week is, "I'm bored!"  He is no longer content to sit on the couch and watch soap operas.  We have been happily incorporating more activities into his day. After I cleaned a house for five hours yesterday, I returned home to a restless husband who repeatedly informed me that he wanted to go somewhere.  I was attempting to make dinner, so suggested he go for a stroll with Eli. He'd put on his shoes, and was halfway out the door before I realized he was actually going.
Recently, a dear friend remarked how difficult life is in the in-between.  She has been dwelling there for several months herself, for different reasons.  It seems so many of my loved ones find themselves in between as well. In between cancer scans.  In between employment.  In between chemo treatments.  In between relationships.  In between stability and chaos. Thankfully, hope continues to reside in the in-between.  Joy and peace are frequent guests.
"In your presence there is fullness of joy." (Psalm 16:11)

Truly Wonderful

For the past few months, we've been grappling with various choices regarding school for Eli.  Although he has relentlessly pleaded with me to homeschool him, I just don't feel as though it's the right fit for our family. He has been consistently apprehensive about attending public middle school.  During his sixth grade year, Eli had a chance to tour the middle school.  He said it seemed intimidating on the outside, and claustrophobic on the inside.  He has spent the past year worrying about various aspects of attending a new and larger school.  

As summer approached, I began researching the limited alternatives available.  I quickly surmised that quietly slipping a private school tuition into our budget was simply not possible.  As we were running out of options, my sister mentioned a small Christian school that I hadn't remembered to include on my list.  

I spoke with the school, and was extremely pleased with what I learned. After sending in an application, Eli and I attended an interview a few weeks ago.  I was immensely relieved to hear that they would work with us on the monthly tuition.  I will be able to work off part of his tuition at the school, by cleaning or volunteering.  Eli was elated to learn that school is Monday through Thursday, and doesn't start until the day after Labor Day.  The students each have their own cubicles, and work at their own pace.  If Eli finishes his work early for the day, he earns privilege time. He can use this time to work on computers, or interact with other students. They will have chapel, and memorize a Bible chapter each month.  The school has a basketball team, and actually play against my nephew's homeschool team. As Eli absorbed each new piece of information, I saw him slowly exhale the breath he's been holding all summer.  On our ride home, the relief was rolling off him in waves.  We were both talking at the same time, exclaiming over finding the perfect answer.  Once again, God supplied exactly what we needed.

"Truly wonderful, the mind of a child is." -Yoda

Low Risk

Last Thursday found us back at KU for a second attempt at completing Jason's heart ct scan.  This time they were able to get his heart rate in the low 70's with various medicines, so were able to go ahead with the test. The nurse said we should get results in 5-7 business days, so I resigned myself to waiting ever so patiently. Of course, I was considerably relieved to hear from them this afternoon.  The nurse said that Jason's test results were good.  She went on to say that the cardiologist feels Jason is at low risk for surgery, so he would clear him for transplant!  This was our last major hurdle before he's placed on the transplant list.  We are immeasurably grateful for such life-changing news.  

"I know that you can do all things; no purpose of yours can be thwarted." (Job 42:2)

Echoes

My sister is always the first one to notice when I begin to fray at the edges.  The past several months have been especially difficult, and took their toll.  I've been finding myself increasingly emotional and not coping well.  Yesterday she casually asked if I had plans for today, and informed me that she had a surprise getaway in store for me.

After we'd been on the road for a bit, I realized our secret destination was Jamesport, Missouri. This is a quaint little town surrounded by an Amish community.  It was one of my favorite spots to visit when Jason and I were first married, but I hadn't been there for many years.  As we drove through the peaceful countryside, I felt my inner turmoil quietly slip away.  She had arranged for a private tour given by the owner of a bed and breakfast, who directed us to a country schoolhouse, Amish farms, and fascinating little shops.  After our tour, we thoroughly enjoyed a delicious lunch before exploring more stores and bakeries.  I was delighted to discover the very same candles Jason used to purchase for me.  The scent is aptly called Amish Country Clothesline. This evening before I lit one, I held it under Jason's nose.  He immediately said, "Jamesport".  

I imagine my sister's arms are growing weary from holding me up all these years.  She effuses a contagious joy that never fails to calm me.  She advises, coaxes, insists, and cajoles as only an older sister can.  I would truly be a mess without her.

"Good deeds have echoes." ~Amish proverb

Teach Us To Sit Still

We went to KU today for Jason's coronary CTA test.  This is a CT scan of the heart after a contrast dye has been injected.  When we were taken back to a room, they decorated his chest with sticky pads and hooked him up to monitor leads.  They also inserted an iv line in preparation for the dye.  We had been told that his heart rate needed to be between 50-60 in order to ensure accuracy of the test.  To try and achieve this, he was given a medicine to take last night and this morning.  I also acted as the caffeine police to remind him to abstain.
Since Jason's heart rate was 82 when they first checked it,  he was given a drug through his iv to try and slow it down.  After a second dose, his rate was still hovering between 77-80.  At this point, the nurse made a phone call to the doctor.  We were cordially invited to return another day to try again.  Sigh.  We will be going back next Thursday afternoon.  This time Jason will take five doses of the medicine before we go.  We felt bad to have wasted the afternoon since our trusty sidekick Keith has family in town for a wedding. We would be pitiful indeed without the immeasurable support we receive from others.
"Teach us to care and not to care.  Teach us to sit still." ~T.S. Elliot

Happy Place

Sometimes when life becomes a bit overwhelming, I escape in my mind to my happy place. I find myself on the family farm of my youth. Some of my most peaceful memories are of springtime. At the first hint of a balmy breeze, my brothers and I would bound from the confines of the house. As the bright sun melted the lingering snow, we would use sticks to form tiny tributaries from the icy puddles in our yard. This simple activity would occupy us for hours.
The return of warm weather also meant we could engage in our favorite activities. The great outdoors provided more room to impersonate Bo, Luke, and Daisy Duke who encountered various obstacles. I also had more space to twirl in my Wonder Woman swimsuit. I battled the forces of evil in this ensemble, complete with bangles, a lasso, and boots.
We spent hours exploring the grove of trees on our property. We would take turns holding open the barbed wire fence so we could squeeze through, and race across the pasture to the trees. My favorite spot was among the lilac bushes that bordered the north end. I often slipped away to this space for quiet contemplation, where the only sounds were the songs of chickadees.
Of course, the passing of years brings countless changes. Gone are the days of playing Matchbox car garage or belting out Charlie Pride tunes. We will no longer take turns on the tire swing or relentlessly search for new kittens among the dusty straw bales in the barn. While those carefree days will never return, the memories provide respite.
"Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows."
-John Betjeman

Indeterminate

Jason had a nuclear stress test last Friday as one of the final steps toward transplant.  The cardiology nurse called today to say the results were "indeterminate"...meaning they saw something on the scan which requires further investigation.  He will be scheduled for a CTA (coronary CT angiography) to take a closer look.  We are trusting God for a positive outcome.
We still haven't completely settled into the overnight dialysis.  My nights are fairly restless since I'm not entirely comfortable with Jason's activities while I'm snoozing.  Several times I've woken to find he's stopped the machine, and is sitting on the side of the bed.  When I inquire, he answers that he's headed to the bathroom.  His catheter is surgically implanted inside...and the tubing doesn't reach the bathroom, so it's a bit unsettling each time this happens.  A couple nights ago he screamed, "Ow!!!!"  When I asked what was wrong, he said, "I'm trying to pull this tube out!"  When he's half-asleep, he's just not aware that he's hooked up to the machine.
We are enjoying the added freedom during the daytime.  It's so much easier doing just one manual treatment each day instead of five.  As his kidney doctor said, "Five treatments a day is just not livable"...it left room for little else.  I've been slowly trying to get back on a schedule for cleaning houses. It's been good for me to get out for a few hours, even if the time is spent dusting and mopping.  I've found great solace in the quiet time alone with my thoughts. I work hard to keep my emotions in check around Eli since he doesn't know every detail of the current struggles within our family. Sometimes I need those moments of release.

"I wait for the Lord, my whole being waits, and in His word I put my hope." (Psalm130:5)

Glamorous

I've come to the conclusion that I'm much too old to sleep in a chair.  When the doctor came out to talk to me after Jason's eye surgery on Tuesday, he casually mentioned that Jason can't lie on his back for one month.  He is supposed to only lie on his right side until his eye has fully healed.  I wondered aloud how this would be possible with Jason's memory issues.  I decided it might be best for Jason to sleep on the couch.  I wheeled out his dialysis machine from the bedroom, and got him settled in for the night.
Since I needed to be close by in case one of the alarms sounded on the machine, this left our chair and ottoman for my repose.  I've always longed for an antique fainting couch, so turned the ottoman sideways and tried to fashion one.  Somehow my creation fell rather short of comfort.  When I wasn't checking Jason's machine or asking him to roll over, I was searching for a cozy position.  After a mostly sleepless night, I arose with a battered back and wretched demeanor.
After two restless nights in the living room, we moved back to the bedroom last night.  We settled with our heads at the foot of the bed so he could face his machine.  I snuggled into the soft mattress, and sighed as I drifted off to dreamland.  Before my drool could hit the pillow, my dear husband began to snore beside me.  We were also instructed that he can't wear his CPAP mask for a week following surgery.  I did catch some winks between snores, checking the machine, and shifting him to his side, but still looked quite bedraggled this morning.
The past several months have been a bit overwhelming.  I've noticed the bags under my eyes have gone out and purchased new bags.  Stress and sadness have left their marks.  It's possible I haven't put much thought into my daily attire as well.  My son has threatened to stay in the car if I deign to continue wearing my capri sweatpants in public.  My flip flops have become my companions.  I am less than glamorous.  I must ask that if you happen upon me wandering the grocery store aisles...kindly avert your eyes and mumble a friendly greeting before scrambling away.
"I am well in body although considerably rumpled up in spirit." -Anne of Green Gables

Update

We went to KU yesterday for Jason's appointment.  We met with a transplant surgeon, dietitian, and kidney doctor.  During the kidney doctor's examination, he mentioned rather matter-of-factly that Jason was unable to see out of his right eye.  I believe he thought we were already aware of his condition.  He asked Jason to cover his left eye, and held two fingers in front of Jason's face.  My heart sank when Jason was unable to see them.
We were grateful to get in with the eye doctor this afternoon.  When they tested Jason's vision, his left eye was better than it's ever been.  He was unable to see even the light on the eye chart with his right eye.  They think his left eye compensated for the other, which is probably why Jason never complained of a problem.  Jason was diagnosed with a vitreous hemorrhage in his right eye, meaning that blood vessels have ruptured in his eye.  The underlying cause is diabetic retinopathy, which is leaky blood vessels.  Jason has had laser surgery in the past to correct this problem.  The doctor said the blood looked to be about a month old, since it had turned white.  He said there's a chance that Jason's fall at the cardiology office as well as his Coumadin (blood thinner) use were contributing factors.  He wants Jason to have eye surgery next week in Kansas City.  He will need to be off Coumadin for five days before surgery, so we are waiting for approval from his primary care physician.  I explained everything to Jason again when we got home.  Of course, my sweet husband's only response was, "As long as I can still see your face, I'm fine."
The KU transplant team will meet next Wednesday to determine whether to proceed with listing Jason for transplant.  His coordinator said she will call next Thursday to give us their decision.  We really didn't get a strong feeling one way or the other, so have no idea of the outcome.  We are praying earnestly, and trusting God for what is best.
"You will seek me and find me when you seek me with all your heart." -Jeremiah 29:13

Routine

We have made it through 98 dialysis treatments at home.  While not without incident, the overall experience has been positive so far.  I had been skeptical when a friend assured me that it would become routine, but it truly has.  It's pretty amazing to watch Jason doing a treatment while lounging on the couch watching the NFL Draft.  He is taking it all in stride, and seems quite content as always.

We will go to the dialysis center for a PET (peritoneal equilibrium test) on May 10th to measure how quickly toxins are absorbed across his peritoneum membrane.  These results will help determine the optimal dialysis prescription for Jason.  We are scheduled to train May 28th-29th on how to use the cycler.  This machine will do exchanges overnight while Jason sleeps.  At that point, we will stop doing the four manual daily treatments.

Jason was scheduled for a heart echo and chemical stress test last week as part of transplant testing.  His transplant coordinator called the day before, and cancelled those tests.  The cardiologist felt that Jason should meet with the KU kidney team before proceeding with the heart tests.  This appointment will be May 14th.  We remain hopeful that this process will continue to move forward.

Train Up A Child

Mornings at our house are rarely joyful.  Today was no exception.  As we were scurrying out the door, Eli suddenly remembered an assignment that was due today.  Since I'd asked him seven times last night if he had homework, my response was less than enthusiastic.  He begged me to take him to school late so he could finish it.  He even brought out the big guns by inserting, "It will have an effect on my grade."  I held my ground, and marched out to the car.  He finally emerged, accompanied by the resounding slam of our front door.
An email arrived from his teacher last week expressing concern over his midterm grades.  His grades had fallen dramatically as a result of missing assignments.  This is the first year I haven't physically taken inventory of his backpack when he walks in the door after school, in an attempt to give him more responsibility.  He's also been doing more assignments without my assistance, partly due to my lack of sixth grade math skills.  I felt his midterm grades were likely evidence that he's been impacted by recent events in our family.
I'm a member of a caregivers site (http://www.caregiving.com/), which has been a great source of support.  I came across this post on their Facebook page yesterday:
"A family member with a chronic illness needs your care, which can mean your kids sometimes must wait.  Or do without.  Or manage on their own.  And, oh!, the guilt can really eat at you, so much so that you might be tempted to let your kids off the hook.  But then you've got little monsters living with you.  When parenting and caregiving collide, do you let your kids off the hook?  Do you find yourself doing too much for your kids or buying them too much or overlooking too much?"
I'm pretty sure I gasped out loud when I read this since I can relate so well.  I frequently worry if my feelings of guilt are causing me to be too lenient with Eli.  Well-meaning friends have implied as much.  In my desire to provide normalcy, I fear I'm too relenting.  I often jokingly call myself a "slacker mom" as opposed to "soccer mom", but some truth hides behind the words.  Even though I'm fully aware that structure and rules are essential for his confidence, I continue to struggle for the right balance.  In trying to compensate for what Jason often can't contribute, I make mistakes.  I pray I can find ways to turn this around...even though he would surely make a cute monster.

Adjusting

We finished our training on Friday, and are adjusting to doing dialysis at home.  It was all fairly overwhelming at first, but is getting easier.  We are doing four exchanges throughout the day.  Each one normally takes around 40 minutes to complete, although some are taking more than an hour. After we do these manual exchanges for four to six weeks, we will switch to a cycler machine which will do the exchanges overnight while Jason sleeps.

Along with the exchanges, we are monitoring Jason's fluid balance to ensure he doesn't get dehydrated or experience fluid overload.  He had very low blood pressure readings on Monday, but is better now.  Because there is sugar in the dialysis solution, it is also impacting his diabetes.  We've added a sliding scale insulin to help with this.  Jason is adapting to new diet restrictions.  He doesn't mind the extra protein we've added, but is missing some of his favorite snacks.  

Jason has an appointment on the 22nd with a cardiologist from KU as part of transplant testing.  We are still hopeful they will decide he's a candidate.  In the meantime, we are feeling grateful to be doing the dialysis treatments at home.

"I watch in hope for the Lord, I wait for God my Savior; my God will hear me." (Micah 7:7)

That's Cool

The abundant sunshine helped me coax Jason out of the house today.  We stopped for gas and Diet Coke before heading to our favorite thrift store.  He leaned back in his seat and took control of the radio after shaking his head at my song selections.  

Jason had an appointment this afternoon at the dialysis center to flush his catheter for the first time to make sure it works.  Even though I'd told him what we were doing, he'd forgotten by the time we pulled up to the center.  His face fell, and he looked incredibly sad as he quietly said, "I don't want to go to dialysis."  When I explained again that we will be doing dialysis at home, he let out a sigh of relief and replied, "That's cool."  In that moment I feel thoroughly at peace with our decision, and grateful the option was available.  The nurse flushed his catheter and changed the bandage.  We are penciled in to begin training the first week of April.  If Jason's labs or symptoms change, we may need to start sooner.  He felt great this week, and has seemed especially alert and happy.  

At Eli's parent/teacher conference this week, he was given a card for a free meal at Famous Dave's. He told me later that he was glad he'd gotten on the A/B Honor Roll instead of the A one this time. He received a free lunch at Applebee's earlier this year after getting all A's...and wanted to eat somewhere different this time, ha.  Since he had an extra-early out today, we decided to go for a late lunch together.  Jason normally doesn't enjoy the noise of restaurants, so we rarely go out as a family.  At this time of day, there was only one other table occupied.  When Jason sat down and put his arm around his son, Eli beamed.

My parents gave me The Tenors cd for Christmas...I find myself turning to this one often for encouragement.

“We who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul, firm and secure” (Hebrews 6:18b, 19a).

Surgery

We are thankful to have Jason's surgery behind us.  They placed a catheter in his abdomen so we can do peritoneal dialysis at home.  We will begin dialysis in two weeks, after the site has time to heal.  The actual procedure took less than an hour, and went very well.  We stayed a couple hours after the surgery since he was experiencing some nausea.  He's been in quite a bit of pain since we've been home, and finally just fell asleep on the couch.  We're hoping the pain medicine will at least take the edge off soon. 

Jason was in an especially silly mood last night.  He wasn't able to wear any jewelry during surgery, so took his wedding ring off last night.  He threw his arms up in the air, did a little dance, and exclaimed, "I'm single!"  

We appreciate all the prayers, messages, and texts.  Thank you to Keith, who sat with me while I fidgeted.  We are exceedingly grateful to have so much support.

"But you, O Lord, are a shield about me; my glory, and the one who lifts my head." (Psalm 3:3)

Update

The kidney nurse called this morning with the results of Jason's labs from yesterday.  When she seemed hesitant to tell me, I knew immediately the news she was delivering.  It's time to start dialysis.  Jason has an appointment with a surgeon on Monday morning.  His dialysis port will probably be placed next week.  We will start dialysis about two weeks later, after the surgery site has time to heal.  We covet your continued prayers.
You who live in the shelter of the Most High, who abide in the shadow of the Almighty, will say to the Lord, "My refuge and my fortress; my God in whom I trust." (Psalm 91:1-2)

Do Not Be Afraid

We went to KU yesterday for Jason's initial appointment.  It was a fairly uneventful visit, but necessary in order to move forward in the transplant process.  We met briefly with a pre-transplant nurse, social worker, and financial specialist.  The rest of our time was spent with a few other patients in a class that covered the details of transplant.
The next step will be medical testing so they can determine if Jason is a candidate.  They will request his records from St. Luke's, so may not need to repeat every test.  He will be seen by their cardiologist at some point.  On our end, we need to obtain clearance from a dentist.  Once this part is completed, the transplant team will meet to make a decision.
Jason has been feeling pretty well for the past few weeks, aside from a cold that his wife was nice enough to share.  Last month's labs showed that he was at 10% kidney function.  His kidney doctor felt we could wait a bit longer before starting dialysis since he's not showing many symptoms yet. We will do labs again next week.
Throughout our marriage, Jason loved getting away to Kansas City for the day.  We explored every area of the city many times, and had favorite spots.  Since he always drove, I never grew comfortable finding my way around.  Our friend Keith was kind enough to accompany us yesterday, and drove so I wouldn't be stressed.  He is indispensable, and a constant support.  At one point in the day, I asked Jason, "What would we do without Keith?"  He answered simply, "Struggle."
Our church family wrote encouraging notes for us, which we read on the way to the appointment yesterday.  We were extremely touched by this gesture.  One especially moving note was written by a young girl named Abbey. At the end she wrote, "I hope whoever is giving up the kidney will know that it is going for a very nice, loving, and strong man."
Several times over the past month, I've heard the admonition "do not be afraid".  One friend reminded me how often the Bible tells us not to be afraid.  The following week, Keith preached a lesson on this very topic.  I lost track of how many times he said those four words that morning.  When I opened the note from sweet Abbey yesterday, the words from a verse she included leaped off the page:  "do not fear for I am with you". While this process holds much uncertainty, there is no room for fear in the face of such a powerful promise.
"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you." (Isaiah 41:10)

Second Opinion

A few months have passed since we received the disappointing decision from St. Luke's regarding transplant.  The evaluation process took an emotional toll, and made us hesitant to further explore this option.  We tried to put the experience behind us, and reluctantly resigned ourselves to the prospect of dialysis.
For the past few days, however, my thoughts have continually returned to the idea of a second opinion.  I finally brought it up with Jason, and asked how he felt about trying again.  His response was simply, "Sure, what would we need to do?"  After talking with Jason's primary physician and kidney doctor, we have decided to proceed.  Jason's primary physician told me that he would need to hear a no at least twice.  He can't say with absolute certainty that Jason will be able to tolerate the surgery and recovery, but feels we are sealing his fate if we don't try.  Some of the misgivings St. Luke's presented are no longer an issue since stopping the Dilantin.  Jason's risk of falling has significantly decreased, while his cognitive abilities have greatly improved.  Jason will be referred to KU on Monday to begin the process.  It has been extremely difficult trying to weigh the benefits and risks, knowing neither decision is ideal.
"I am the Lord, the God of all mankind, is anything too hard for me?" (Jeremiah 32:27)