My Whole Being Waits

We have adjusted to in-center hemodialysis for the most part.  It's hard to believe that six months have passed since we switched.  We have grown to appreciate the nurses and techs who take such thoughtful care of Jason. When he first started on the nocturnal schedule, he was on treatment for eight hours from 8pm-4am.  We were eventually able to request an earlier time, so started going from 6pm-2am.  Since his labs were always good, they ended up cutting his treatment time to seven hours.  We initially chose nocturnal dialysis because patients generally feel better when fluid is removed more slowly.  It was my hope that Jason would sleep through his treatment, so the time would pass more quickly.  He still hasn't been able to fall asleep at the center.  After talking with his doctor, she thought Jason would continue to do well on a shorter treatment time.  This week we decided to switch from nocturnal, and try a new schedule.  He's now going from 5pm until 8:30pm.  He seemed quite pleased to learn that he would be going home sooner.  I'm fairly certain that school mornings will be less blurry for me as well.
We went to KU last Tuesday to finish updating Jason's tests for transplant.  He'd already been cleared by cardiology after recent extensive testing.  When we went through this same process in 2013, they approved Jason in all areas except weight.  They'd placed him on hold on the transplant list until he lost the weight he'd gained from peritoneal dialysis. Since switching to hemodialysis this past April, he's already lost nearly fifty pounds.  Because of this, we were extremely hopeful going into the appointment last week.  We were certain we'd conquered the last hurdle in his way.
We spent the morning in a series of appointments before his labs and scans.  Once again, we met with a social worker, pharmacist, financial advisor, dietitian, nurse practitioner, kidney doctor, and transplant coordinator.  It felt like a simple review of information until we met a different kidney doctor, who hadn't seen Jason previously.  She had many questions regarding his hospital stay in 2008, primarily the blood clotting disorder which was diagnosed at this time.  She also expressed concerns about his short-term memory loss since he'll need to take anti-rejection pills daily.  I assured her that I've effectively managed his medications for the past seven years.  She told us she wanted to further study his medical records from 2008, as well as speak to his physicians from that time.
The transplant team normally meets every Wednesday to decide which patients to list for transplant. Yesterday was long while waiting for a phone call.  Today was longer still.  Finally, this afternoon I decided to try an email since I couldn't imagine not knowing all weekend. I received a reply that said his transplant coordinator had been out of town for a conference...so they didn't discuss Jason this week. It went on to say that the meeting for next week is cancelled. So we shall hopefully have news sometime in October.  Sigh.  

"I wait for the Lord, my whole being waits, and in his word I put my hope." (Psalm 130:5)

Conrad

After I graduated from college, I found myself uncertain of my next venture. I wasn't sure how to apply my studies of the Old Testament or the Greek language to a profession. I ended up moving back to the quiet South Dakota countryside. I've previously referred to the years that followed as my flailing period. Even though I was employed during this time, I lacked any concrete ambition or direction.
This all changed in the summer of 1997. Mom and I traveled the roads to Missouri, our anticipation growing with each passing mile. I sat clutching a stuffed Curious George monkey, which was the start of many gifts for my nephew Conrad. I still remember racing down the hospital hallway to greet him for the first time.
I soon began making weekend road trips to Missouri since I missed his tiny face. I no longer had doubts about where I wished to reside, so filled out job applications whenever I visited. I was delighted when I was finally able to make Missouri my home.
I am entirely grateful that I had a front-row seat over the years to watch Conrad grow up. I sat beside him on church pews, trying to keep him quiet and entertained. I sat on the grass while he patiently waited for fish to bite his line. I sat as he won awards for correctly moving his bishops and pawns on a chessboard.  I sat proudly as he led hymns on Sunday mornings.  I sat on a lawn chair as he trotted horses to win ribbons. I sat nervously on a hospital chair, waiting for a surgeon to remove his appendix.  I sat on bleachers and clapped as he made free throws. And, on Saturday, I sat with teary eyes as the tassel on his graduation cap was moved to the other side.

Transition

Jason made the switch to in-center hemodialysis last Wednesday.  They wanted him to start with treatments during the daytime, when there were more nurses available in case issues arose.  He saw the kidney doctor today, who felt he could go ahead and move to nocturnal treatments, possibly as soon as this Friday.  The nocturnal treatments will likely be from 9pm-4am, although a nurse today indicated that he may stay up to eight hours.  Since these treatments are longer and slower, they are more gentle on his body.  He will sleep at the center three nights per week.  It is our hope that he will continue to feel as well as he has the past two years on home peritoneal dialysis.
Even though he's been more than ready to escape the chair at the end of his treatments, Jason has done well so far.  We've made adjustments to his diet and fluid intake, which are both more restrictive than before.  Our ultimate goal is still transplant, so we feel as though this change is a step in that direction.  We are optimistic that he will be able to lose weight more easily.  We are praying for an easy transition, and for his contentment in the days ahead.

Broken Together

Since first hearing this song a few weeks ago, I've been unable to shake some of the lyrics.  Even though the song is not entirely applicable to our marriage, I was still affected by the message.  When Jason and I exchanged vows, we were hopeful about our future together.  Now, almost fifteen years later, we both have scars.  Jason's physical scars tell a story of trach tubes, biopsies, feeding tubes, surgeries, and dialysis accesses.  While my scars are less visible, the years have left their mark on me as well.  During those early years after Jason's brain injury, I experienced loneliness and mourned the loss of the easy companionship we once shared.  Time has graciously brought healing to each of us.  Instead of grieving the losses in our marriage, we are learning to embrace the changes and appreciate the many gains. 
"The only way we'll last forever, is broken together."

He Was Able To Come Back

There are times when caregiving can seem tedious or wearing.  The past seven years have not been without challenges and frustrations.  Some nights I long to crawl into bed to watch Gilmore Girls on Netflix without needing to first set up a dialysis machine.  I don't derive pleasure from poking Jason to check his blood sugars or clotting time.  I daydream about a blank calendar page with no medical appointments scribbled on the squares.
I was not overly enthusiastic about yet another appointment today.  Jason wholeheartedly shared in these feelings.  I may have resorted to bribery to convince him to shower and get ready.  When we pulled up outside the clinic, he grumbled under his breath.
During the check-up, his kidney doctor referred to a discharge summary he'd printed from Jason's medical record.  It was written by Jason's primary care physician on April 29th, 2008, when Jason was discharged from our local hospital to a long term facility in Kansas City.  I've read much of Jason's medical record, but had never seen this particular report.  The nurse printed us a copy so we could read it in its entirety.
As I was reading, I came to the portion that described what happened at 3am on February 29th.  It explained that the cuff on Jason's ventilator tube popped.  The doctor stated that Jason went into cardiac arrest and coded.  The next sentence leaped off the page:  "He was able to come back."  I was overcome with emotion upon reading these few simple words that held such promise.
The summary also included the sentences, "It was believed that he might not make it" and later, "He has made great strides, and you wouldn't have thought he could have possibly survived this, but he continues to improve."  The final sentence of the report read, "My hope is he should do well, rehab, and then one day, actually call us and let us know that he is getting out of the hospital."
These slips of paper were evidence of the tremendous gift we received.  He was able to come back and watch his son grow in inches and in self-confidence.  He was able to come back and fill our home with uproarious laughter.  He was able to come back to return his mom's tight hugs.  He was able to come back and sing along with Run DMC's Christmas In Hollis in the car today.  He was able to come back to remind me to be grateful.

To Everything--Turn, Turn, Turn

We had a long discussion with one of Jason's kidney doctors earlier this week.  It was similar to many conversations we've had recently with his doctors and nurses.  We have been trying to decide what's best for Jason's health and well-being. 
Even though Jason has been on a strict 1100 calorie diet for months, he has been unable to lose weight.  We briefly considered weight loss surgery, but have chosen not to go that route.  We are afraid he will never be able to reach his target weight for transplant while getting the extra calories from peritoneal dialysis.
Jason's labs have shown that he's not reaching optimum dialysis adequacy.  The remedy would be to try adding a half hour to his already 10 1/2 hour treatment time overnight.  The doctor called this "cruel and unusual punishment", so did not order the change.  We are still doing a manual treatment in the daytime as well. 
Because of these reasons, we have made the difficult decision to begin steps towards switching to hemodialysis.  This would be done at the dialysis center, rather than in our home.  There is an option of doing home hemodialysis at some point, but the training and procedure seem rather daunting.
We are planning for Jason to do nocturnal dialysis at the center.  He would sleep at the center three nights a week, while getting an eight hour treatment each time.  This type of hemodialysis is easier on the body since it's longer and slower.  Patients normally feel much better this way.  He would likely be there from 9pm-5am. 
Jason has an appointment next week with radiology for a vein study.  We will meet with a vascular surgeon the following week.  The surgeon will decide whether a fistula or graft access is better for Jason.  The next step will be an out-patient procedure to place the access.  This access site will heal over several weeks before being used.
We are thankful that we have time to adjust to this change before it actually happens.  Peritoneal dialysis has been beneficial for Jason in many ways.  I could personally do it indefinitely, but it no longer seems best for his future health.  We are grateful there are other options to help move toward transplant.

When my husband finally returned home after spending five months in three different hospitals, my profound joy overshadowed any trepidation about the task ahead of me.  I was determined that I could completely manage his care.  Never mind that he was not yet able to stand or walk on his own, or that he was still receiving some nourishment through a feeding tube.  Forget that I was unable to leave him alone since a brain injury had obliterated his short-term memory.  Even though he still struggled with incontinence, I believed I could handle anything.
Those first weeks he was home are truly still a blur.  Even though I was entirely overwhelmed, I was still convinced I didn't need to accept offers of help.  Thankfully, we'd been assigned a nurse who made regular visits, so I wasn't wholly responsible.  She quickly became not only an ally, but a dear friend.  My fearless attitude lasted until the first time my husband fell.  When I was unable to get him up, I simply had no choice but to ask for help. 
During the next several years of caregiving, I grew more and more comfortable receiving support.  I learned the benefits of allowing others to step in and help.  I became adept at receiving assistance in countless ways.  This change did not occur overnight, and at times I still found myself resisting.  I can clearly remember one instance when I tried to decline an offer for help.  This friend stated, "Please don't rob me of the happiness I would feel by helping you.  You would be taking that gift away from me."
When we got the news last year that my husband would need to begin dialysis, I desperately wanted to do dialysis for him at home.  I knew that I would be unable to do this without receiving support from others.  I didn't hesitate when my sister and a friend offered to go through training with me.  This enabled me to take breaks, knowing they could care for my husband in my absence.  This allowed me precious trips to visit my father in Texas after his devastating cancer diagnosis.
As family caregivers, it is often difficult to receive help.  It may be hard to relinquish that rigid control of certain aspects of care.  We may feel as though no one else can understand exactly what is needed.  I've come to realize that receiving support is essential to a positive caregiving experience.  We can glean countless rewards from the strength and energy of those around us. 
 (I wrote this post for Caregiving.com to encourage other caregivers to be open to receiving help)