Reprieve

I went to the dialysis center on Friday to become educated on the different types of dialysis.  The nurses were incredibly compassionate and informative.  I felt very much at peace with my decision of peritoneal dialysis.  This will enable us to do dialysis at home every day, as opposed to three times per week of hemodialysis at the center.  This will work more like Jason's own kidneys, so hopefully he will feel better overall.
The nurses indicated they would be scheduling the procedure with a surgeon right away to place the dialysis catheter in Jason's abdomen.  A little voice inside my head cried, "Please slow down; I'm not ready!"  Even though I'd had weeks to mentally prepare, I still didn't feel adjusted to the idea.  I was extremely emotional over the weekend, and prayed for that elusive peace to return.  Last night before I drifted off to sleep, I remembered my favorite parts of Isaiah 55..."My thoughts are not your thoughts, neither are your ways my ways" and "You will go out in joy and be led forth in peace".  I felt calm in the security of these promises.
Jason had an appointment with the kidney doctor again this morning.  I went in armed with my questions and ready to face the next steps.  After we spoke at great length about dialysis, she granted the wish I hadn't even dared to voice aloud.  She's decided to wait and see how long Jason can remain at his current level of kidney function before starting dialysis.  She will continue to monitor monthly labs, and is changing a few medicines that might help him retain more function longer.  She told us he may be able to wait as long as six to eight months!  The doctor is also getting in touch with St. Luke's Hospital to start the process of determining if Jason is a candidate for transplant.
We are extremely grateful for this reprieve.  Before school starts, we're going to plan a family road trip, even if we just get away for the day.  We so appreciate all the expressions of concern and support we've received.
http://www.webmd.com/a-to-z-guides/peritoneal-dialysis-4391

All Aboard!

After receiving the news about Jason's kidneys, I had a difficult time deciding whether to proceed with my travel plans.  As the prospect of home dialysis and transplant became real possibilities, I realized this might actually be the best time to take advantage of this opportunity.
Since I'm rather pitiful about flying, my thoughtful brother purchased me a train ticket.  On the trip to Chicago, I had my very own private room in the sleeping car.  I truly felt like a pampered queen.  Meals were also included, so I strolled to the dining car for a leisurely breakfast and lunch.  I had planned to spend the seven hours on the train reading, writing, and listening to music.  I found myself simply decompressing and gazing out my windows.
I delighted in spending time in my brother's new home.  He and his family live in a lovely peaceful neighborhood.  My sister-in-law and niece purchased bouquets of flowers for my bedroom and bathroom.  I  became quite the spoiled house guest, and was lavished with hugs and chocolate cake.  I loved walking to a nearby park and seeing my brother race his daughter on the swings.  I was able to try several new restaurants, and discovered a new favorite in Maggiano's Little Italy.
On Monday morning, we ventured into the city.  It was extremely interesting to walk downtown among the bustling crowds.  I thoroughly enjoyed our time at Navy Pier, where we explored little shops and ate Italian ice.  Naturally, I didn't brave the giant Ferris wheel, although my fearless niece did so with glee. We rode a water taxi beneath the giant buildings on our way back downtown.
Before I jumped the train for home Tuesday morning, my niece said we needed to play something quick and special.  We played "store", one of her favorite activities.  After she loaded her plastic shopping cart to overflowing, I rang up her purchases on the cash register.  It was the perfect ending to a fabulous visit.
The trip home flew by with the blur of farmland and trees out the windows.  My amazing sister fetched me from the station, and delivered me safely home to my sweet family.  I was greeted by Jason and Eli sitting on the couch holding flowers and a welcome home sign.  I quickly noticed my sister had cleaned our whole apartment from top to bottom.  While I was off indulging in deep-dish pizza, she was scrubbing our shower and shampooing carpets.  I keep finding more areas she transformed with hours of labor.  I feel as though I've been given a fresh new start.
I am thankful for friends who brought lunch for Jason and Eli while I was gone.  Eli was thrilled to be invited on a miniature golf outing with friends.  I am exceedingly grateful to my family for continually going above and beyond to show their love for me.  I have been blessed beyond measure with such a strong support system.  I feel refreshed and prepared for what lies ahead.
"Bless the Lord, O my soul, and all that is within me, bless His holy name."  (Psalm 103:1)

19%

We were finally able to talk with the kidney specialist this afternoon.  Thankfully, we were able to see the same one who took such good care of Jason last time.  She wants to run further tests to try and determine the cause of his abnormal lab results.

Jason will have a kidney ultrasound next Thursday morning.  She wants to look at the size of his kidneys, as well as the blood flow into them to rule out any blockages.  We will also do more bloodwork next week, checking his phosphorus level and thyroid.  She told us that thyroid problems could reduce blood flowing to his kidneys.  We will also take in a urine sample when the lab opens after the holiday. This sample would show any signs of infection, and if proteins are leaking into his urine, which would be further indication of kidney disease.  She is unable to see any glaring reasons for his kidney failure.  His diabetes and blood pressure have been well-controlled since coming home from the hospital.

We were told that Jason currently has 19% kidney function.  She said she normally refers patients for a kidney transplant when they fall below 20%.  If these tests don't show a treatable or reversible reason for his poor kidney function, this will be the next step. She has already started the process, and asked if we have a preference of facilities in Kansas City.  The waiting list for a donor is 2-3 years (although I would be tested as a match), so he would be on dialysis during that time.   He would begin dialysis when his function reaches 10%.  She gave us information  about doing dialysis at home this time. 

We are incredibly grateful for the texts, calls, messages and countless prayers over the past few days.  We would ask that you continue praying as we wait for more answers. 

"No longer forward nor behind

I look in hope or fear;

But, grateful, take the good I find,

The best of now and here."

~John Greenleaf Whittier

Need

We are in need of your prayers.  When Jason went in for his check up recently, some of his lab results were abnormal.  We went today so they could do follow-up bloodwork.  His doctor called me this afternoon to say that Jason's kidneys are shutting down again.  He said we need to see a specialist sooner rather than later.  The earliest he could get us in was July 3rd.  Please pray as we face this...he's already been through so much.

"I lift up my eyes to the mountains-where does my help come from?  My help comes from the Lord, the Maker of heaven and earth."  (Psalm 121:1-2)

Abundant Joy

God continues to abundantly provide for the needs of our family through the kindness of others.  This past week, we received an extremely touching gift from a dear friend at church.  She has consistently been an encouragement to us over the past several years.  We are so grateful for her unwavering support.

On Friday, my sister gave me an envelope with strict instructions not to open it until Easter.  She seemed to be implying I lack self control in such matters, ha.  Luckily, I'm a chronic night owl, so ripped it open at 12:01am.  Inside I found an Easter card where someone had written, "You are a blessing to so many people, may those blessings be returned to you ten-fold."  The envelope also contained a generous gift to our family.  Although I have repeatedly harassed my sister, she refuses to disclose the origin of this blessing.  Anonymous gifts are difficult for me since I'm unable to squeeze the amazing people who send them (hmm, maybe that's why they wish to remain anonymous?).  Our family is exceedingly grateful to you, whoever you are.

Through many frustrating phone calls and mountains of paperwork, I believe we have taken the necessary steps to resolve our issues with Jason's benefits/insurance.  For some reason, this review process has been incredibly difficult every year.  This year was especially stressful since it had such a negative impact on our monthly budget.  I can only pray that it will be easier in the future, and that I don't allow myself to give over to worry before knowing the final outcome.

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.” 

― Corrie ten Boom

Joy Comes In The...Afternoon!

This afternoon the mailman delivered joy to my door...in the form of a package from Aunt Kathy.  I was thrilled to discover she had painted something especially for me.  She and I have both been encouraged by this quote that I mentioned in a previous blog.  My aunt is a wonderful artist who has brought precious memories of my grandparents to life on canvas.  I was so touched that she not only sent it to me, but that she had created it herself. 

"Scatter joy!"  ~Ralph Waldo Emerson

Time After Time

My definition of love has changed over time.  I remember the first time Jason told me he loved me.  We were in the middle of a marathon overnight phone call, acting like teenagers even though we were well past those years.  The days that followed were filled with excitement and carefree joy.  When he brought a gumball machine ring to my apartment and knelt in front of me, I understood the meaning of a deep lasting love.  As he held up our baby boy for the first time so I could count his fingers and toes, my heart was filled with a hope for our future.  Whenever we faced struggles in our lives, Jason's love was protective and unfailing.  While he lay in a hospital bed hooked up to tubes and machines, I was overcome with a desperate love at the thought of spending the rest of my days without him.  Today when I looked over at his face, I realized he is the culmination of every love I have experienced.  When the fireworks and drama fade away, there is a quiet contentment that moves in and fills the space.

"But love, I've come to understand, is more than three words mumbled before bedtime.  Love is sustained by action,  a pattern of devotion in the things we do for each other every day." 
 -Nicholas Sparks