Tuesday, April 30, 2013

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.


Thursday, April 18, 2013

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.


Wednesday, April 10, 2013

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)