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.

Update #14 - 16Sep 23:05

 

DAY 1 - Encompass Rehab 

Long day for Jennifer.  They woke her for her first shower in eight days.  She described it as “life giving.” That said, the next comment was that “I feel like I’m in a movie set of a dystopian reality show.”

She participated in speech and cognitive evaluations, recumbent bicycling with the occupational therapist, as well as an evaluation from the rehab attending doctor.

To be honest, it’s been a pretty slow start, with today being primarily just an evaluation day.  While we’ve heard good reports about this facility, we’re concerned that we are heading into a WVU Football weekend (VA Tech, a big rival)—which we experienced last weekend when the entire hospital basically shut down for the event.  Jennifer is also not really being given the space and quietness to get the restful sleep she desperately needs.  Lots of phones ringing and nurse call alarms are really disturbing her.  It’s not what we had hoped for.

So we need wisdom and patience—pray for that. Julia gave us a comprehensive report on her 8-hour day with Jennifer. And then we (Julia, Abby, Caleb and I) strategized for the weekend travel logistics and our plan for advocacy for Jennifer at her facility.

Closing with another quote of the day-

Occupational Therapist: What was your occupation?

Jennifer: You mean What IS my occupation?  I am a pediatrician.

Update #13: 15Sep 22:35

 

Breaking News:  Jennifer has been transferred to the Encompass Rehabilitation Hospital!  Answer to prayer. Thanks all for the prayers.

The day was long.  Waiting, waiting. But then we got the news and things accelerated quickly.  The most amazing intersection occurred at 5pm:  Jennifer rolled out of the front door of the towering University Hospital in a wheelchair; Julia and Abby arrived from their long SLC-CLT-PIT flight in a car rental; and Josiah and Barbra Bancroft rolled in from Philly on their way to lead a Sonship weekend in Kentucky.  What a reunion!  Mom sucked in the balmy summer air she has been dreaming of and we all feasted our eyes on her sitting in the front of that Jeep, clothed in her WV “Home” t-shirt.

Since only one person could be part of the in-processing at the rehab center, I went to dinner with Josiah and Barbra while the kids took Jennifer to Encompass.  The report from Abby is that Jennifer’s room is “bleak.”  Barren. No decor. No furniture save the hospital bed.  Perhaps it will motivate Jennifer to work harder to graduate from the program and get home.

So now we enter this new phase.  Jennifer will be in intensive Physical, Occupational (and perhaps Speech?) therapy.  We can send only one visitor to joint her from noon-8pm.  Tomorrow-Julia (who leaves Sunday to go back to her MBA classes at U of Utah); Friday-Abby…and beyond that not yet determined.

Luke and Jack (and Botu) are planning to drive from SLC starting Friday.  Those guys are crazy.  Couldn’t talk them out of it.

Prayer Requests for Rehab:

• Continuing progress in regaining strength, balance, coordination, and sight.
• Good relationships with the staff for Jennifer.
• That Jennifer would be encouraged by the visits of her kids, one-at-a-time.

And finally, a Quote of the Day (from early this morning):

Me: Who should we call?  I can’t remember who wanted to talk to you today…

Caleb: Everyone wants to talk to mom.  We should start auctioning off slots to talk to mom.

Mom: Limited time left. Hurry up. 

Update #12: 14Sep 7:45pm EDT

 Another day of watching and waiting.  

We continue to wait to hear about a transfer to an inpatient rehab facility—and it all seems dependent on the insurance authorization. 

And today…nothing.  No word.  And pretty much nothing happening for Jennifer in this hospital now.  Only vital signs and continuing respiratory therapy.

She did have the 10 staples removed from the 3 inch laceration in the back of her head—which occurred UNDER her helmet.  Difficult to understand how that happened.  Seems like severe shearing forces as the helmet hit the pavement.  So many things we probably won’t ever understand.

The morning started off pretty rough.  Jennifer feeling despondent about life in general.  Hearing details about what is going on in our teams in Africa—which were meant to encourage—just caused distress.

However, good FaceTime with our kids, Jennifer’s mom, and Ree’L & Jason buoyed her spirit.

And while no therapist came, Caleb took matters into his own hands.  He got her behind the walker and they walked twice as far as the day before.  She felt the paradox of liberation and general exhaustion.  Then back to bed to recover and watch Ted Lasso while I ran some errands.

Please continue to pray we can get into the rehab facility tomorrow and get the next step going.

Update #11: 13Sep 8pm

 So, a good but hard day.  It seems like Jennifer plateaued a bit mental status wise.  Speech still fluid, but with some regular bouts of confusion.

Hospital-wise, today was a busy Monday.

First, Occupational Therapy came.  They did some exercises—sitting, pushing up from lying down, standing, taking some steps with assistance, taking some steps with a walker.  Small shuffling steps.  Exhausting.  Went to the sink and washed her face.  Their assessment was that she is ready for the inpatient rehab.  They think she can handle the three hours of therapy per day.  But the discharge and transfer is the call of the Trauma Surgery Team.

They arrived about 1pm. New attending.  But we all agreed that she is stable with regard to her injuries, making good improvements and is ready for discharge.  Yay.

Third, the Case Manager.  She talked specifically about the Rehab options (for the 7-14day program).  One company—Encompass—two choice locations, Bridgeport (closer to our farm) or Morgantown (around the corner for this current hospital).  We asked for the Bridgeport option but now it’s all about “bed availability” and “insurance approval”.  Pray for those obstacles to be removed.

Last, the call from Encompass.  We talked through most of the things we have already heard.  What to expect issues. While we are thrilled to get her started in the Inpatient Rehab, one big bummer is the different visitor policy.  We have enjoyed the University Hospital’s policy of two visitors in the room from 8am-7pm.  Any two.  Mix and match, swap in and out.  The Rehab policy is “ONE PERSON PER DAY.”  (12-6). That is the same one person.  No more, one person subbing in for another.  One unique individual can visit Jennifer per day.  This policy arose because they had some patients get Covid due to a parade of visitors swapping in and out. This is going to be hard for our kids who are arriving over the next few days.  Julia and Abby coming Wednesday-Sunday. Jack and Luke coming for a week starting Friday. 

A couple more thoughts about Jennifer’s general state of mind.

It’s a continual battle for her to let go and rest.  She feels guilty for being in the hospital, for causing this ruckus (and “it seems like it wouldn’t be so bad to recruit an army of prayer if I was doing something valiant and heroic in Africa…but wiping out on my bicycle in West Virginia?”).  She’s constantly thinking about the team, the Area, the prayer meetings (“have you arranged the biweekly prayer meetings, Scott?”).  Helping her to embrace the fact that her job is to rest and heal IS A BATTLE.

And when the Trauma Team did their rounds, she asked the Trauma surgeon- can I expect to return to normal —or am I looking for find a new Normal? And is this a time line of months or years?  These are questions for which we have no answers.  It’s that fog of uncertainty in which all of us are staggering.

Update #10: 12Sep 8pm

 Another day of progress.

We arrived to find her more alert and more articulate than yesterday.  The words flowed freely and smoothly throughout the morning.

Quotes of the day.

We came in after she requested the nurse to come in and help her toilet in the bedside commode.

“I told my nurse that my youngest son is 23 years old. It’s seems to have been a 23 year pause between the major indignities. I thought I was done with such indignities but I just took a 23 year pause.” (Needing help to go potty seems to feel like a major humiliation).

Reacting to the news of Biden mandating vaccination for all companies with 100 employees or more— Jennifer said, “Public Health and Personal Choice are often at odds.  And Americans have a hard time when their personal freedoms are limited — but they will agree to it to prevent people from driving drunk or driving 150 mph…”

Caleb said, “I think she’s ready to go home.”

I gave her my iPad and she typed The Quick Brown Fox Jumped Over the Lazy Dog (slowly with a lot of typos- but the autocorrect fixed ‘em).

She stayed awake for about 6 hours today and felt completely exhausted by the dinner time—but that amount of awake time is also a huge piece of progress.

The Chief Trauma Surgeon came is and talked at length about her progress, her prognosis, and the hurdles ahead.  We have a lot of rehab ahead which she warned will generate frustration and anger.  We just need to give her time and space. 

So, tomorrow—potentially—she could be discharged from this the University Hospital to an inpatient rehab facility.  Pray for that.

Update 9: 11 Sep 9:45pm EDt

     Today’s schedule: 

• Breakfast - 3 bites of scrambled eggs, 3 spoons of yogurt
• Sleep
• Eval by Speech and Swallowing Therapist because of choking episode yesterday.  Result: supposed to thicken all liquids to be more viscous to prevent aspiration
• Sleep
• Lunch - 3 spoons of yogurt, one bite of graham cracker (Me: you have to eat to get stronger.  Jennifer: I’m not hungry.  I feel like I got run over by a train).
• Sleep
• Neighbor delivering clothes for Jennifer
• Sleep
• Visit from the Hyltons
• Sleep
• Dinner - delivery and assistance to occur after visiting hours by nursing—so no idea if any bites taken.

The Hyltons buoyed our spirits dramatically.  We heard the highlights of the week’s meetings which we so unexpectedly missed.

They were getting ready to leave and Jennifer said “Wait, I want to see a picture of Emily’s baby, your first grandchild.”  Nice.

After they left, I was filling out the details of our relationship with the Hyltons (Area Director colleagues for many years) to Caleb.  I mentioned that their youngest daughter, Abby, is just a couple of years older than Luke.

Jennifer, who we thought was fast asleep, opened her left eye and corrected me matter-of-factly, “Elizabeth is their youngest.”  And then rolled over and went back to sleep. (I fact checked with the Hyltons and, of course, Jennifer is correct).

Hooray.  Jennifer is back.

(Note- in light of Jennifer’s transfer out of ICU, there is much less data/info to communicate.  So we are moving to once-a-day updates only… and probably slightly less frequent than that in the near future).