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 his 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)