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)

A Round Tuit

When I was a little girl, I took great pleasure in exploring my mom's jewelry boxes.  I was particularly lucky since she had an extensive collection as a result of being a Sarah Coventry consultant.  I would conduct a detailed inventory, locating all my favorite treasures.  I especially admired the necklace with a girl jumping rope, and a locket filled with solid perfume.  Once I'd dabbed a bit of perfume behind my ears, I would move on to find the sparkly purple bracelet and matching pendants. 
There were few traces of my dad among these baubles.  One drawer contained his class ring, while another held his silver dollars.  However, nestled among the silver and pearls, was a simple circle of wood stamped with the word "tuit".  This not only belonged to my dad, it epitomized his personality.

My dad thoroughly delighted in puns and word plays.  His eyes lit up whenever he shared a new silly joke.  Even on the most difficult days of his illness, he often managed to infuse moments with humor.  During one of the visits from grandchildren in the past year, he regaled them with jokes and stories as they sat at his feet.

Dad took great joy in the simple things of life.  Freshly-tilled soil; a good sale on orange juice; a box of fluffy chicks ordered through the mail.  He also found joy in the complexities of mathematics, Greek pronouns, and a challenging crossword puzzle.  He spread this joy wherever he went.  He gave this joy to me.
On his last visit here, he didn't yet know that he was sick.  He spent time organizing the clutter in our garage that had gradually migrated from our small apartment.  A simple task, but it created space for our car on icy winter nights.  He was happy knowing I would not be fighting with an ice scraper on school mornings.
Joy has been rather elusive these past few months.  Even when it makes a rare appearance, it is accompanied by bittersweet undercurrents.  When Eli loved camp after his initial misgivings, I found myself wanting to share the news with Dad.  I longed to call him from the train last week to recount tales of my relaxing journey.  After a dear person in our lives offered to pay Eli's tuition for this year, my dad was the first person I wanted to tell.  I could almost hear him exclaim, "Good for you!" in a voice choked with emotion.
I find comfort in knowing there were no unspoken words between us.  I called him every morning after I dropped Eli at school, and often talked with him again later in the day.  I am exceedingly grateful for these conversations.  I had planned to fly to Houston for another visit, but ended up being just one day too late.  We are continually admonished to share our feelings with those we love since we never know when it might be too late.  I believe my dad would say, "Don't wait until you get a round tuit."

Lessons Learned

It seems hard to believe that we've been doing dialysis for a year now.  We have never regretted the decision to do peritoneal dialysis at home.  While it was a bit overwhelming at first, it has definitely become more of a routine.  Jason continues to feel great, and is consistently happy and content.  Our goal is still transplant, but have been struggling to get Jason to the required weight.  Because the dialysis solution contains dextrose, it can add 1000 calories per day.  We plan to be even more aggressive in the next few months with diet and exercise.  Thankfully, because of his lack of short-term memory, he doesn't realize he should already be weary of chicken breasts and salads.  We are also attending an information session on Sunday afternoon regarding bariatric surgery.  This would be a last resort.
We have learned much in the last year.
1.  It Takes A Village.  Truly.
We haven't done this alone.  Even before starting dialysis, we were armed with information.  While researching our options, I came across a blog entry written by a man who started peritoneal dialysis while in his early 30's.  He painted a realistic picture of dialysis from a personal point of view.  He literally hit the ground running after receiving a transplant, and is currently making plans to participate in his second Ironman triathlon.  He recently traveled to Cambodia as part of his campaign to raise money for a charity that helps with literacy and education.  He is an inspiration, and gives us hope.
My sister and our friend Keith attended training with us, and have graciously stepped in to help.  Our dad was diagnosed with cancer right before we started dialysis.  I felt such panic, wondering how I would be able to travel and visit him.  I'm truly grateful that I've already been able to make two trips to Houston, and feel confident that I can return.  I was able to fully focus on spending time with Dad, knowing they were taking such careful care of Jason.
We are surrounded by a strong support system.  We have grown extremely close to the nurses at the dialysis center.  They never make me feel silly when I call with questions.  They clearly adore Jason, and genuinely want the best for him.  I've been incredibly grateful for the support I receive from other members on Caregiving.com.  Our family and friends also supply unwavering encouragement.
"How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?"  (I Thessalonians 3:9)
2.  Humor Is Essential.  And In Abundance.
The past year has not been without stress.  The learning process of dialysis was rather hairy.  Thankfully, we were able to add laughter to our days...and long nights.  Since Jason is on the machine for 10 1/2 hours overnight, I'm constantly doing the math to figure how late he can stay on the couch before being banished to the bedroom.  We often still cut it close in the mornings before school.  The machine has three cycles: drain, fill, and dwell.  I scramble to help get Eli ready, while Jason keeps me apprised of the progress of the machine.  Lately I've been asking if he's Dwayne or Phil (we're still trying to think of a clever name for dwell).  
"A joyful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22)
3.  God Always Always Provides.  Always.
We honestly remain in awe of the ways God has provided for our every need.  This is not the first year we have received blessing after blessing.  In the six years since Jason's brain injury, we have been astonished at the kindness of others.  We surely have been given more anonymous gifts than anyone else in the whole wide world.  Even people we've never met have shown tremendous generosity and thoughtfulness.  God's timing is impeccable.
"Many, Lord my God, are the wonders you have done, the things you planned for us.  None can compare with you; were I to speak and tell of your deeds, they would be too many to declare."  (Psalm 40:5)
4.  God Sustains.  So Does My Sister.
My sister must quietly chuckle when people tell me I'm strong.  She knows the real story.  She's on the receiving end of tearful phone calls, and is an unfortunate witness to my unravelings.  Her strength and patience are boundless.  I have run out of ways to thank her for holding me up.
"For it is you who light my lamp; the Lord my God lightens my darkness." (Psalm 18:28)

Omaha

For Eli's second birthday, my parents suggested we meet in Omaha to celebrate.  They drove down from South Dakota, while we made the drive from Missouri.  We spent the daytime hours exploring the zoo, then enjoyed dinner at Valentino's Italian buffet.  The next morning found us lazily floating in the hotel pool.

This became a tradition of sorts, as we met the next couple of years to celebrate in the same way.  These days were incredibly special for Eli, and helped forge early bonds.  Of course, my wise parents knew these carefree weekends also benefited Jason and me.  We had already weathered Jason's first health crisis, and the financial stresses that inevitably followed.  These trips provided an escape for us.  How will I ever find enough words to thank my parents for all these little moments?

"You can find something truly important in an ordinary minute." -Mitch Albom

Grow In Joy

This plot of soil may look unremarkable, but it once held the rewards of much labor. Tucked behind the barn, this garden was Dad's escape, his therapy, his joy. While we were solicited to assist with his endeavors, it clearly belonged to him. At the first hints of spring, he would begin plotting and planning while thumbing through pages of the Gurney's catalog. After long days at work, he would unwind by tugging weeds or hunting for green beans. He would write sermons in his head with his hands in the dirt.
My siblings and I were less than enthused by the various tasks associated with such a large garden. My least favorite activity was following behind the tractor while Dad unearthed potatoes for our buckets. I did not enjoy shucking corn or shelling peas. I didn't understand why I must weed the okra when I would not be eating it. I longed to lounge in the house away from the sun and bugs. My brothers expressed their

displeasure by assaulting each other with dirt clods. We had the opportunity to spend countless hours of quality time together, much to our dismay.
Dad took such pleasure in sharing the bounty of his garden with others. Even after we'd grown and left the farm, we continued to benefit from his toils. We all had freezers filled with bags of corn and pantries stocked with canned homemade dill pickles. There is no other salsa that compares to Dad's.
I now find myself wishing for those quiet hours among the neat rows of plants. During recent days while Dad has been dealing with such pain, I've closed my eyes and pictured him crouched beside tomato vines.  I wish he could experience the peace and calm of those summer days. I wish his only concern was where to move the sprinkler or which kind of squash to plant.
"I think that if ever a mortal heard the voice of God, it would be in a garden at the cool of the day."
-F. Frankfort Moore