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).

Update #8: 10Sep 0945pm EDT

Friday evening.

Jennifer moved from bed to chair and back twice today.  To see her sitting in a chair feels like miraculous progress.  This afternoon we came in to her room after we grabbed a bite to eat in the hospital cafeteria and found her sitting with a styrofoam cup of coffee sitting on the tray in front of her.  

“Where’d you get that,” I said.  

“I asked for it.  They said what would it take to get you up and moving out of bed…I said a cup of coffee,” she said (in a raspy whisper).

Precious.

We have repeatedly recounted the events of the week and it is slowly beginning to stick.  She’s comprehending that we have missed our Area Director Meetings (“That’s the whole reason we came to America.  Aren’t you calling in everyday or something?”).

The neurologist came by to talk to us and examine her again this afternoon.  He did an extensive neuro exam and the only abnormality he found was a slight discoordination of her fine hand movements (and, of course, the right eye movement problems).  He summarized the MRI results for us (mild sub-arachnoid hemorrhage, mild subdural, mild diffuse axonal injury in the right parietal lobe) which is otherwise distilled down to  the blanket diagnosis of Traumatic Brain Injury (TBI).  He said, the most common long term sequelae are: headaches, insomnia, and balance difficulties.  He offered to have her follow-up in the WVU Neuroscience TBI Cohort Clinic.

From one update to the next, I can see the objective progress, but when she says, “Are you still filming the Girl Scouts?” it can be jarring.  And discouraging.  Her brain is still injured and it still hurts to hear the evidence of the injury impacting her ability to think and speak.

On our Bundibugyo Team, we have a family who we recruited for a long period of time.  They agonized whether they should take the risk of uprooting from a great job, community and church and come to Uganda.  And at some point we shared with them a message we heard at Julia’s church (Blacknall Pres) from Alan Poole as she graduated from  Duke.  He said, “Graduates, what you need now is Courage Not Clarity.” I’ve shared this with other potential missionaries and also most recently with our Bundibugyo Summer Interns. 

Ouch.  Yup, because what I want right now is CLARITY.  I want to know THE PLAN!  I want to know how this turns out.  Does Jennifer fully recover? Her balance, her strength, her cognitive brilliance, her ability to type, to write for this blog (!), to see without double vision…?  Do we return to Uganda?  

OK, so surrender the Clarity.  

What about Courage? 

Websters says this:  it is the ability to do something that frightens one; strength in the face of grief or pain. 

Facing fear, grief, or pain (easier said than done). 

Joshua 1:9 says Have I not commanded you? Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you whereever you go.

How do we face fear or grief?  With the knowledge that God is with us—whereever we are, in whatever circumstance. 

Lord, our eyes are on you

Update#7: Friday 10Sep 11:00am

Jennifer greeted us this morning with a smile. Every day this week has been a small but significant improvement and today is no different. Yesterday we were mostly lip- reading the few words she mouthed, today she is whispering short sentences. Yesterday she took her first breaths on her own, today she is breathing steadily albeit quite shallowly on her own. Yesterday she was still in a collar, today she can roll her head to look out the window, and with great effort is sitting up in a chair!

We’ve come so far this week! But there’s still a marathon to go.

Nurses this morning are already talking about “when she get’s home,” but that feels infinitely far away right now. Three bites of yogurt was all she could handle. The respiratory therapist wants her to float the inspirator indicator about six inches high and she can barely make it flutter in the bottom of the tube. 

We’ve taken this whole week hour by hour, day by day, grateful for the present moment, praying for the next. Now we’re starting to face the mid-term logistical implications and it feels daunting.

Update #6: 9Sep 9:50pm

We continue to reap the fruit sown in prayer.

The ophthamologist came by this afternoon and evaluated her vision.  They’ve been waiting for the extubation so they can talk to her and hear her read various lines of numbers.  

The Good News: she is 20/20 in the right eye (that’s VERY GOOD NEWS AND CAUSE FOR CELEBRATION!)

The Not-so-Good News: the muscles of ocular motion and lid lifting are not working correctly —and she has double vision.  He hopes that as the brain heals and the blood around the brain is cleared and the third cranial nerve is freed up or less irritated that this might resolve.  If not, there are options that include patching and surgery which could help the situation.  This is likely to require months to sort out.  We will be following up closely as outpatients in the University Eye Center.

From Jennifer’s perspective, the other big win of the day is getting rid of the stiff and uncomfortable cervical spine collar.  She feels so much better without it.

—————————————————

I want to step back and make a couple of comments about the situation in which we find ourselves.

Many of you might know that my father had a similar accident (over-the-handlebars traumatic brain injury) while in his 70s.  He was riding at high speed on the coastal trail in Northern California.  He never fully recovered.  He, too, had a brain bleed (different type) and his injury ultimately snowballed into other complications.  So the brain bleed from a bicycle injury…I’m having a little PTSD experience.

The other memory which has been stirred up is from two years ago when Jennifer’s best friend from childhood, Robin Ida, died from a subarachnoid hemorrhage at age 59.  That hits pretty close to home too. 

Two horrible outcomes from brain bleeds among those we have loved dearly.  These memories have made it difficult to process Jennifer’s accident for me.  After reading a note from Robin’s brother, Matthew, today, I went back to read the blog about Robin and her death.

From the late 60's to the 80's Robin gave me her grit and her smile; from the 80's to now it has been Scott. Losing Robin makes every birthday a wonder. Objectively, Scott has nearly died multiple times but here we are. This year has been one of the hardest ever, wresting Christ School from the brink of demise, moving away from the slightly more do-able comforts of near-Nairobi to the decidedly more tiring life of the Uganda-Congo border. I know Robin's family needs her just as much as our family and community need Scott. It's not fair. God's mercy is an inscrutable tangle that I cannot justify and explain.

While we cannot see ahead far enough to know that Jennifer is going to achieve a restoration to full health, I think we can say that she is not going to die from her injury.  That is an answer to the prayers of an army of family, friends, and colleagues.  But it again begs the question of why some die and others don’t.  Jennifer’s reflection so poetically prods here.  Inscrutable.  Mysterious. Inexplicable. Tangled.  God’s mercy.

My father’s final years were a muddle of confusion.  Robin was snatched away from her family without warning or lenience. We live in a broken world riddled with injustice, loss, and suffering.  What sense can we make of this inscrutable tangle? We need only this..

Be still and know that I am God.

I will be exalted among the nations,

I will be exalted in the earth.

The Lord of hosts is with us, 

The God of Jacob is our fortress.

-Psalm 46

Update #5: 9Sep 12:55pm

 

12:10pm

It’s been a good day.  

Respiratory therapy switched her ventilation mode to CPAP (meaning she’s responsible to initiate breathing and the machine just provides a little additional pressure support).  She’s been doing that since 6am continuously.  Then they performed a number of tests of her ability to generate pressure and volume to show she is ready for extubation (endotracheal tube comes out and she is free from the ventilator to breathe on her own).  I must admit this is a terrifying moment.  The ventilator has done a great job of keeping her alive so a little hard to take that off.  And we know that if she needs to be intubated again it will be difficult.  It took three attempts in the Emergency Dept to intubate her Monday evening.  She’s always had a limited ability to open her mouth widely and dentists throughout her life have berated her for this.  So, hoping that once the ET tube is out…it will stay out permanently.

12:35pm

She’s extubated!!!  Breathing on her own!  She looks great without the tubes and tape all around her face!  What. A. Relief.

Of course, we are ready to have conversation—but she’s tired.  Worn out by the bathing, the constant nursing neuro checks, and now the extubation.  

We began to recount events again and she just grimaced and lipped “Don’t remember”.

Let me close this brief update by sharing a moment from the morning.

We noticed that left eye open, scanning around for us.  She’s awake.  So we come to the bedside and greet her, squeeze her hands, talk, ask questions.  She gestures a motion of writing with her right hand.  We hold the little tablet up and she scribbles in barely legible caps: T-O-D-A-Y?  We explain the date, time and place and again review the events of the week.  She raises an eyebrow and gestures to write again: P-L-A-N-?  Yes, our Jennifer is back.  She is awake and she wants to know what is the plan?  Of course, what are we waiting for?  We laughed.  And cried, too.

This feels monumental to me.  A quantum leap forward in recovery.  An answer to prayer.  So, we’ve gotten some good answers to:

Preservation of cognition. Getting off the ventilator.  

Still requesting prayer for the right eye issue—she has some vision there, but the pupil is still dilated, the eyelid droopy, and the eye motions not normal. Eye docs will probably reevaluate in the next 24 hours.  She will also be having a repeat CT scan—and an MRI—tonight.

I’ve had a number of people share Psalm 46 with me this morning so let me close with that.

Psalm 46

God Is Our Fortress

    [1] God is our refuge and strength,

        a very present help in trouble. 

    [2] Therefore we will not fear though the earth gives way,

        though the mountains be moved into the heart of the sea, 

    [3] though its waters roar and foam,

        though the mountains tremble at its swelling. Selah

    [4] There is a river whose streams make glad the city of God,

        the holy habitation of the Most High. 

    [5] God is in the midst of her; she shall not be moved;

        God will help her when morning dawns. 

    [6] The nations rage, the kingdoms totter;

        he utters his voice, the earth melts. 

    [7] The LORD of hosts is with us;

        the God of Jacob is our fortress. Selah

    [8] Come, behold the works of the LORD,

        how he has brought desolations on the earth. 

    [9] He makes wars cease to the end of the earth;

        he breaks the bow and shatters the spear;

        he burns the chariots with fire. 

    [10] “Be still, and know that I am God.

        I will be exalted among the nations,

        I will be exalted in the earth!” 

    [11] The LORD of hosts is with us;

        the God of Jacob is our fortress. Selah