A long hike

Jennifer and I are listening to Kate Bowler read her newly released book (on Audible), No Cure for Being Human.  It’s her story of being diagnosed with Stage 4 colon cancer (metastatic — spread to her liver, etc) at age 35.  She’s a poetic, poignant writer — with a sense of humor (and we love her because she teaches in the Divinity School at Duke). We’re only 3 chapters in, but the pain of her diagnosis, the acute detail of the indignities, and the real and potential losses counted— all reverberate with familiarity around this little farmhouse in West Virginia. 

In Chapter 3 she talks about her time with a psychologist…

he tells me that he learned a secret from hikers of the Appalachian Trail. People who dare to attempt the whole trail face down more than six months of lugging their belongings over more than two thousand miles of daunting terrain. Because eager beginners start their trek carrying heavy packs brimming with tarps and tents, cooking utensils and flasks and granola bars, that first stop on this long journey is the most important one. The hiker is already starting to flag, but they have only just begun. They have reached a moment of decision, the moment to ask, “What can I set down?” The extra cooking pot. The fleece hoodie. “This will be a hard journey,” he says. “Is there anything you can set down?”

This challenge whirls around us.  What things do we need to set down?  How long will this journey of healing take?  Two thousand miles?  It feels like that today.  Jennifer and I had an animated discussion this evening (some fly on the wall might have called it an argument). What should we say to those who we supervise?  Do we set out some hypothetical timeline, imperfect though it may be? Or do we just ask for grace, live one day at a time and admit that we have no idea? The fact of the matter is the human penchant for control leads us to self-deception. We don’t order our steps.  But that realization may not come to light until our plans are turned upside down and emptied out on the pavement in tiny little pieces.  So tempting to try to put those little pieces back together.  

Kate Bowler again…

“It’s easy to imagine letting go when we forget that choices are luxuries, allowing us to maintain our illusion of control. But until those choices are plucked from our hands—someone dies, someone leaves, something breaks—we are only playing at surrender…

Ah, Surrender.  Set it down.  Still thinking—the pot or the hoodie…

A little good news.

 Five more appointments since Monday.  Mostly pretty good news.

Tuesday- Speech Therapy (which includes a neuro-psych/cognition component).  The therapist repeated two mental status and cognitive tests in which Jennifer achieved perfect scores.  They saw no reason for her to need to return to this clinic — so she was discharged with no need for further follow up. Yay.

Thursday- Turns out that no one noticed that Jennifer had an abnormal urine culture result from the rehab facility (sample sent because of the long period of the in dwelling urinary catheter in the ICU).  We had to sort that out with  a primary care provider this morning.  They repeated the urinalysis which is still abnormal—and she is mildly symptomatic— so then there’s the trip to the pharmacy to pick up an antibiotic prescription.  

Then to follow-up with the Trauma Surgery Team in Morgantown (90 mins north).  A chest X-ray showed her pulmonary contusions and rib fractures are mostly healed — so she was released from any further follow-up here, too.

Then a quick drive 30mins south to Bridgeport to United Rehab for evaluations with Occupational Therapy (OT) and Physical Therapy (PT). In broad strokes, OT deals more with upper extremities issues and how they relate to issues of daily living (eating, dressing, bathing, etc) while PT deals more with lower extremities and ambulation.  Today, Jennifer demonstrated excellent upper extremity strength and dexterity—and was released from any further follow up with OT.  PT was a different story.  Jennifer has quite a bit of weakness in her legs and core (abdomen/back) which are the result of both the brain injury and being immobile for 3 weeks.  Additionally, balance is a real problem—a brain problem and also related to her right eye problem.  She needs support to walk—an arm to lean on, a walker or something like a doorframe or railing to steady herself.  We have twice weekly appointments —and lots of homework workout routines—for the coming month.  Pray for progress with her strength, ability to walk independently, and safety (freedom from falls).  Thanks.

First follow-up appt

 

The days since discharge from the rehab center have fallen into a certain rhythm.  Morning coffee with Luke, Abby and Jack.  Some sort of outing, usually organized by Luke, which involves getting Jennifer into the (rental) Jeep and going somewhere for a short walk.  Coming back for scrumptious food made by Abby—or sent by friends.  A nap for Jennifer.  Repeat.

Today, Luke flew back to Salt Lake City.  And we headed back to the WVU Medical Campus for our first outpatient follow-up with the ophthamologist.  Jennifer has a “third cranial nerve injury”—not sure exactly where the nerve is injured along its pathway from the midbrain to the eye, but it is a serious injury which has resulted in a droopy eyelid, a dilated pupil, and impaired ability to move the eye upwards, inwards, and downwards—which is causing double vision.  They were able to document some improvement in the eye movements since she was in the ICU, but we heard for the first time today that the wide dilatation of the pupil is likely to be a permanent outcome (it seems that the pupillary function is controlled by sympathetic fibers running along the outside of CNIII which are more vulnerable to traumatic injury). That is disappointing on a number of levels.  A permanently dilated pupil makes bright light uncomfortable.  The accommodation reflex of the eye which causes the lens to thicken bringing near objects into focus—will not be possible now.  And the asymmetric appearance of the eyes will be disconcerting to Jennifer.  

We are still asking for prayer for the extraocular muscle function (governing eye movements) to fully return.  That is our hope and prayer.  We will be returning monthly to the WVU Eye Center to monitor the progress—and they expect that the improvement may continue over the next 6-9 months.  There are surgical options we would rather avoid if recovery of function is inadequate.

This is hard news to hear.  We continue to be thankful for the preservation of Jennifer’s life and look forward to “seeing” how this unfolds for the God’s purposes.

Better days…

 

A friend asked yesterday, “How’s Jennifer doing?”  So, I started listing off all the things she did during the day:

- went for a ride in Luke & Abby’s rental Jeep up into the woods of our farm and walked about 200 yards (slowly and with support).

- came back and did some therapy exercises in the yard 

- napped for 2 hours

- morning and afternoon coffee

- evening shower

- sat on the front porch and listened to an audio book

- grilled salmon and pasta feast in the evening

- FaceTime with pretty much all of the immediate family.

Pretty good day. 

(Woke up this morning after 10 hours of sleep still feeling exhausted—did we over do it yesterday, maybe, but I think that it just the nature of her body saying I need more restorative, healing sleep).

These are all answers to prayer.  Thanks to all.

She's home (West Virginia home)...

 We have been desperately scheming how to get Jennifer home from rehab.

For reasons that are not entirely clear, the WV Dept of Health has shut down visitation to chronic care facilities--definitely related to COVID spikes in the state.

So, the facility recognized that Jennifer was a candidate for early release--and let her go even earlier than we expected.

Sigh of relief...

Prayers and Promises

Jennifer is coming home!

Case Manager just called to say discharge is scheduled for Thursday 10:30am!

Thank you for prayers.

This came after this morning's rainbow and spectacular watercolor paintings by God.

Rough Monday

 Rough day all around.  This is the brief version.

Caleb left this morning.  He’s been my right-hand man, my primary helper and support since this accident.  We’ve spent morning, noon and night together for nearly two weeks.  Tough to see him go.

I came into a meeting with some of the rehab staff expressing my strong wish up front that we get Jennifer out as soon as possible.  We see improvements and are thankful for the care—but there are serious deficiencies as well.  My request and comments about dissatisfaction with the lack of therapy over the weekend and lack of continuity of care were met we defensiveness and a bit of hostility.  I get it—I’ve called into question the value of the care she’s receiving, but we are at a point of advocating for Jennifer.  

Then—got news from Julia that her dog ran away in Salt Lake City this morning. She spent much of the day putting up posters in the neighborhood and at some of the trailheads.  A runner called having spotted the dog and she was recovered in the late afternoon. Yay.

Then—got news from Luke that their dog may have eaten some rat poison.  Seems like the dose may have been quite small —but that’s stressful.

Then—despite Abby’s willingness to always help out a colleague in need by covering shifts in the hospital—she cannot find anyone to cover her shifts later in the week.

So Prayer points.

1.  Pray we could extract Jennifer from rehab this week.  So she could have time with the kids here at the farm before they must return to Salt Lake City.

2.  Pray Abby can get someone to cover her shifts.

3.  Pray Luke and Abby’s dog sees no ill effects from a possible toxic ingestion.

Reunion and dispersal

 Two weeks tomorrow since Jennifer’s accident.  She’s made remarkable progress. But not a lot has happened therapy-wise this weekend.  And it’s debatable whether her being there is actually detrimental to her recovery.  Case-in-point.  Last evening they woke her up at 9pm to give her sleeping medicine (melatonin).  Seriously.  

Anyway, we had the greatest, therapeutic picnic this afternoon. We did an end run around the “One Visitor Policy”—we gathered at a picnic table outside her room and opened her window.  Today, Jack was her “designated visitor”.  He stayed inside with her while we brought food to the window.  And he brought a water color set, took Jennifer outside and they painted together.  She painted a “burning bush” and Jack a scene from Lord of The Rings.

The Fellowship fragments over the next day as Julia flies back to her Utah MBA classes today and Caleb heads back to Fort Bragg tomorrow to resume his duties there.  Luke, Abby and Jack will remain through the week.  I hope that we will get Jennifer back to the farm before they leave.  Everyone has contributed to so many ways to Jennifer’s care (and mine).  Cleaning, cooking, shopping, organizing, modifying the house for accessibility with hand railings. Team Jennifer.

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As we slowly transition away from the acute intensive care to the chronic rehab care, I’m ending the “Updates”.  I will continue to post regularly, but the term “update” sounds like something you should interrupt your life to read—like Jennifer got AirLifted to University Hospital—but the news here is now less urgent.

On another note, so many people have written encouraging notes, texts, emails.  I can’t count them all or respond to each one.  But I want to share a couple of them…

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Remember when Jennifer was on the ventilator and the Respiratory techs were doing Spontaneous Breathing Tests to see if she would breathe on her own.  And she wouldn’t.  The ventilator would go silent and she wouldn’t breathe.  Then the emergency back-up mode kicked on and an Emergency Alert would come on and say “Apnea Alert.”  We asked people to pray and in response we got this note from one of Luke’s classmates at Christ School:

“Dear Dr. Jennifer- you have to wake up, so many of us are here, waiting to see that miracle in your life today…you have to breathe on your own, your husband Dr. Scott, your children, your family, your friends and your pretty little patients are waiting for you; we need you back and soon…we have a God who never fails, and just know that He is there and here with you. May you see His Light and glory and raise up and defeat the enemy.  You have the power and the victory because the Lord is with you. We are waiting on you dear mum…please wake up; Arielle and Adriel needs to see their grandmum and not just in pictures, they need to hold you and say they love you. Please wake up. Dear God, do a miracle in the life of Dr. Jennifer for your name’s sake and the glory of your name. Amen.

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And today I got an email from a former Bundi teammate from many years ago who is having a severe medical trail.  She said this…

The other thing I wanted to share were Jennifer’s own words that she sent to me just a few months ago, when I’d just received my cancer diagnosis.  They were strengthening words for me, so here they are back to you in ways that we could have never expected-

What is Happening to you is sorrowful. It is not your fault. God doesn’t have to show you the tied-with-a-bow reason it is all OK.  And Love is still the most true thing. You are loved. And God is good.

Life is so fragile isn’t it? And such a gift. Your accident reminded me so clearly - that even though I have this cancer diagnosis, my life is actually no more or less fragile than anyones, and the Lord is truly the only one who numbers our days…

Update #16 - 18Sep 2240

 Slightly disappointing day.  WVU Football Game Day.  Today, VaTech a big rival, came to town and everything shuts down—apparently including rehab centers.  Jennifer got one hour of Occupational Therapy, but that’s all.

Julia did go up and visit from noon-6pm.  Tomorrow she must fly back to SLC to resume her MBA classes.  She had two pretty full days with Jennifer.  A good mother daughter visit.

Today, Julia read to her from EveryMomentHoly, a compilation of liturgies for every conceivable situation.  She read from “A liturgy for the Feeling of Infirmities.” 

There were several phrases that really resonated with Jennifer

- “…a small share of the malady of a frayed creation” (so Grace at the Fray)\

- “may the decline of our bodies incline our hearts and souls ever more vigorously toward your coming kingdom.”

Luke and Jack arrived after a 30 hour continuous cross-country drive from Salt Lake City.  So good to be with them. Tomorrow we hope to all go up and picnic in the grass outside of Jennifer’s window.  

Update #15: 17Sep 22:45

 

A better day in rehab today.  

I didn’t expect that Jennifer’s comment about her situation being a “dystopian reality show” would result in a response which would transform her bleak room into a floral sanctuary.  Thanks all.

Physical therapy worked a lot with her today on balance and movement.  She’s moving better, but still needs a wheelchair or walker to go even short distances (e.g., the bathroom).  The NeuroPsych doc spent over an hour with her giving both encouragement about the possibility of full recovery as well as speaking frankly about how it is impossible to predict what the timeline will look like.  It’s looking like it’s possible that we might be able to transition out of the inpatient rehab in the middle of next week and move her home to our little farm house.  Then we would begin outpatient rehab visits.  It’s beginning to become clear how we are going to be moving continuously from one follow-up visit to another—PT, OT, TBI Clinic, Eye Clinic, PMR…

Meanwhile here at the Farm — or as the kids call it, “Bag End”, Bilbo Baggins and Frodo’s little corner of the Shire—we are preparing for her return.  Setting up a bedroom on the first floor which requires bringing a bed downstairs—through the window because the stairs are so narrow.  Julia and Caleb worked themselves to exhaustion today…cleaning, moving Jennifer’s clothing downstairs, baking cookies, sorting and trashing.  And Jack and Luke (and Botu, their Golden Retriever) are doing a marathon 30-hour drive from Salt Lake City to Buckhannon.  Oh my.