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

Update #4: 8Sep 9:20pm EDT

UPDATE #4: WEDNESDAY 8 SEP 7:00pm

Not much to report since the midday update.  

Jennifer continues to respond to the nurses as they perform hourly “neuro checks” - “Open your eyes; thumbs up; squeeze my hands; wiggle your toes; push your toes against my hands; pull your toes against my hands.  Ok thanks.”

And then there are the occasional spontaneous awakenings which we treasure.  This afternoon, while I was talking to my mom and sister, Jennifer suddenly woke up (meaning: she opens her left eye and looks around without moving anything else). I showed her my phone on FaceTime and she WAVED at Sonja and my mom on the phone (waving her hand—but not lifting her arm which is tied down to prevent her from removing her ET tube).

Afterwards as we again recounted the events of the past 48 hours to her…she grimaced as she processed the facts. Hard but good to see the processing.

Tonight she will undergo an MRI of the brain in an attempt to further understand what is going on inside her brain.  

Tomorrow we hope that there will be further improvements in her wakefulness which will allow her to fully breathe on her own and get off the ventilator.  Keep praying.

Update #3: Wednesday 8Sep 12:05pm

 

UPDATE #3: WEDNESDAY 8 SEP 12:05pm

The night shift reported no significant change to her mental status, still sleeping most of the time, but passing neuro checks when stimulated.

When we arrived, we felt a bit discouraged because she did not really respond to our voices or rubbing of her hands and feet—BUT THEN…

She had one of her intermittent lucid intervals which was so encouraging:

 - We covered the left eye (good one) and she was able to count fingers with just the right open (she held up the same number of fingers on her hand as we put in front of her eyes). ANSWER TO PRAYER.

- She is moving her lips and seems to desire to talk. Exciting.

- Jennifer clutched her chest and seemed to be trying to communicate something. So we put a pen in her hand and she was able to scribble out three letters (C-O-U…) which we were able to interpret as COUGH.  Got nursing to suction a lot of mucus out of the endotracheal tube.  Evidence of cognition and communication! ANSWER TO PRAYER.

The ICU Team and Trauma Teams round on Jennifer independently.  

The ICU Team is primary and they are the ones responsible for the ventilator management.  They have a couple of strategies for trying to get her to wake up more (medicines…I wanted to suggest espresso, but restrained myself).  We’ve been cautioned to continue with patience as an important strategy.  So we wait.  

I asked the Trauma Surgery Chief where Jennifer lays on the trajectory curve of similar head trauma patients and she said she is ahead of schedule.  It typically takes days for similarly traumatized patients to wake up.  That has been a great encouragement this morning.  We do see progress, but it is incremental.  

So…slow progress.

Prayer Requests for today:

• Continuing healing in the brain
• Incremental wakefulness
• Weaning from the ventilator

Thank you to all who are praying and sending encouraging messages.  We have been FLOODED with notes of encouragement and prayers.  We read them all.  We treasure each one. We gratefully acknowledge our dependence on your prayers for Jennifer’s healing and recovery.  We look forward to the day when she will be able to read each one for herself.

PRAY FOR JENNIFER! —Edited — Update #2–Sep7 10:00pm

UPDATE #2: TUESDAY 7 SEP 10:00pm

The hospital’s COVID policy does not allow for visitors staying overnight so we’re back in Buckhannon getting a night of rest.

This afternoon was a long game of waiting by the bedside for brief minutes of consciousness between long periods of sleep. In her responsive moments she seems to understand who we are and respond to some yes/no questions. She is passing neuro exam with flying colors - squeezing fists, pushing and pulling with toes and fingers, and even giving two thumbs up on command. But we’re disappointed that she is still not breathing on her own. 

Please continue praying that tomorrow she will improve enough to come off the vent.  Getting the endotracheal tube out will allow her to speak and then we will have a much better idea of her level of cognition and memory.

UPDATE#1: TUESDAY 7SEP 11:30am

Writing from the NCCU (NeuroCriticalCare unit) in the UniversityHospital WVU.

Since I last wrote 11 hours ago—here’s what I know.

She’s had a total of three Head CT scans.  Essentially, the reports are “no change” — which is quite good news.  No progressive bleeding.  There’s also no evidence of worsening swelling (edema) of the brain.  So, the imaging data is encouraging.

That said, there are still a couple of big issues.  Her mental status is still quite impaired.  She ranges from “somnolent, but following commands”—opens eyes and moves extremities to commands—to “responds to pain only”.  She is still on the ventilator and has failed a couple of attempts to allow her to take over and breathe entirely on her own.  This seems to be normal experience in the ICU.  But we really need her to wake up more and start breathing actively.  She has been completely off sedation for the past 12 hours so that does not really explain her impaired mental status.  Once she gets off the vent, it will be easier to evaluate where she is at cognitively.

Second major problem is the right eye.  The ophthamologist was able to get her to cooperate enough to follow his finger to evaluate her eye movements.  She has impaired ability to gaze medially, upwards and downwards — which in combination with the dilated pupil and droopy eyelid indicates involvement of the third cranial nerve. Not sure where.  This nerve originates deep in the midbrain and snakes up through the brain to the eye.  Is there a collection of blood impinging or irritating this nerve—or could it have been injured from the extreme deceleration forces? We don’t know.  When she is extubated, the eye docs can better assess what vision she has in that eye as well.

So, prayers…

- The “no more bleeding” prayer.  Check.  Thank you, God.

- Still need prayer for getting off the vent; for preservation of cognitive function; and for the right eye.

All for now.  Hope for another update later today.

—————————————————————————

ORIGINAL post — 6Sep evening.

Scott here.

While out on a bike ride this afternoon —our last day in West Virginia before heading to our Area Director meeting in Philadelphia—Jennifer had a terrible accident.  She flew over the handlebars landing on her head on the pavement—but she was wearing a helmet and that undoubtedly saved her life. Thankfully a number of Good Samaritans stopped to help stabilize her.  Thank God for Emergency Medical Services.  Medical Ambulance and Fire Rescue vehicles were on the scene within 15 minutes.  Due to some abnormal neurologic signs (dilated right pupil) an immediate decision was made to bring a Medivac helicopter to take her to the Regional Trauma Center at the University of West Virginia in Morgantown. That arrived another 10 mins later — transporting her 65 miles north in a matter of minutes.

It’s been a long six hours.  She’s had 2 CT scans showing a subarachnoid hemorrhage.  Her responsiveness was deteriorating after arrival in the ED so she was put on a ventilator and continues to have ventilatory support.  She’s gotten hypertonic saline and mannitol to reduce brain swelling.  

The dilated right pupil is very concerning.  It’s a sign often indicating pressure on the brain from a hematoma putting pressure on the brain—which she doesn’t have.  There is some evidence on the CT that there is bleeding involving the optic nerve.  The outcomes here include permanent blindness, return to normal vision or something in between.  

The care has been outstanding.  The ED Trauma Team is a coordinated machine.  Efficient, calm, professional, competent.  And caring.  

We are so thankful for the outpouring of love, concern and prayer.  

It’s a battle.  The outcomes are uncertain.  

Pray for:

- getting off the ventilator

- healing of her brain—and no more bleeding

- healing of her right eye

- a complete return to normal cognitive function and memory

Thank you all.