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

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).