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Thursday, September 30, 2021

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.

Monday, September 27, 2021

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.

Friday, September 24, 2021

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.

Wednesday, September 22, 2021

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...







Tuesday, September 21, 2021

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.





Monday, September 20, 2021

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.

Sunday, September 19, 2021

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.




——————————

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…

——————————

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.

——————————-

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…



Saturday, September 18, 2021

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.  



Friday, September 17, 2021

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.





Thursday, September 16, 2021

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.

Wednesday, September 15, 2021

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. 




Tuesday, September 14, 2021

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.

Monday, September 13, 2021

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.

Sunday, September 12, 2021

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.

Saturday, September 11, 2021

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).

Friday, September 10, 2021

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.

Thursday, September 09, 2021

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

Wednesday, September 08, 2021

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.