The Long Journey Ahead (3 Month Update)

October 7, 2010 by  
Filed under Our Recovery Journal

Brain injury recovery is much like an intense journey through a faraway land.  The path is long and twisted… the road incredibly taxing.  Encounters along the way seem unfamiliar and the behavior of everything different than what one might expect.  Around every corner is the potential for a new challenge, and the solution to each challenge seems just slightly beyond the bounds of our creativity.  We feel unsure of the best course of action, small in the face of the enduring task which seems to grow larger each day.  The greater goals our journey appear fuzzy:  defining success an ethereal task.  The big picture is so tall and wide that it is difficult to step back far enough to allow our eyes to take it all in.

 

Cracks in the Mirror

And so it is with brain injury recovery.  The most intense medical problems apply constant pressure on the mirror of Jessica’s life.  That pressure has resulted in a large crack in the mirror, which in turn has led to secondary cracks branching off the original and fragmenting out into thousands of tiny capillaries.  Each of these cracks represents a specific issue that must now be dealt with.  The web of cracks in the mirror so complicated that only an expert problem solver dare attempt to fix it.  Just as the larger crack(s) led to many smaller cracks, the original heart attack(s) and stroke(s) have led to so many ancillary issues that it is hard to keep track of them all.  Each problem is related to another, and the mirror now manifests itself as an intricate puzzle that seems to be constantly shifting and moving.

The cracks in the mirror of Jess’ life have grown and changed, representing the complicated web of health issues that must be addressed.  These issues have necessitated four different medical placements in the past three months.

  • First was the ICU to aid her function enough to allow her to live
  • Second she moved to the neurological ICU to protect and stabilize the brain
  • Third was the step-down unit to allow her body systems time to improve and recover
  • Fourth the skilled care facility to allow her a chance to take the first few figurative steps toward retaking the reigns of living

At each of these facilities, priorities have changed and shifted in order to allow her to continue recovering as efficiently as possible.

The rollercoaster of living life day-to-day living is now a thing of the past.  Life is month-to-month and each day bears much more resemblance to the day before.  The journey still feels like we are advancing through a foreign land, but as time goes on the encounters have begun to seem more familiar.  When it was minute-to-minute, Jessica was flanked on her left and right by an intimidating row of lifesaving machines.  The web of tubes and wires that connected her to all these machines served a purpose, but to the untrained eye they simply represented a life status that remained utterly complicated.  During the past three months, Jess has gradually shed the machines, wires, and tubes that helped her survive and gave her a second chance at life.

 

Detailing Her Progress

It is easy to take the little things for granted in our life.  Things like standing up, moving around, and eating dinner.  Jess has been able to some progress in these areas… especially in being able to swallow.  When you haven’t eaten in months, the act of eating no longer comes naturally.  Swallowing correctly is a hurdle so high and wide that it requires great courage to take the first bite.  Food could easily get stuck or go down the wrong pipe, and in either case the result is a big setback.  Jess initially began drinking thickened liquids, then progressed to thin liquids and finally to eating soft foods.

Pureed chicken dishes, smashed green beans, and mashed potatoes may not appear to be the most appetizing meal, but seeing a patient successfully eat these items for the first time is an exhilarating experience.  The 2-3 tiny meals she is now able to consume allow her to remain off the feeding tube all day long.  If she is able to increase the size of her meals, she will no longer need night feedings to supplement her diet.  The feeding tube could be permanently removed and she would be free from her last medical machine.  At her current level of improvement, that tube should come out soon and she will have the freedom to reside in a room free of medical hook-ups.

Physically, she has made slight gains with her arms and legs, but she still cannot feel or move her right foot.  Watching her in therapy is like watching a newly born fawn struggle to move around and get up.  Using her stroke-affected hand and attempting to stand (with assistance) are motions that her brain doesn’t remember and must relearn.  Simple motions such as pushing, pulling, and squeezing require total concentration.

These movements are done slowly and carefully.  Every muscle must be told what to do individually and each motion is the sum of all of those muscle parts moving in patchwork unison.  Her strength and control are both weak, but at least she has begun the journey of regaining function in the arm.

 

Quantifying the Memory Loss

Her clarity of memory has also improved… and I didn’t realize until recently exactly how her memory was affected by the trauma.  Jessica has no memory of the past 1-2 years at all and she has limited memories of the past 5-7 years.  This may seem like a bad thing, but I like to think of it as a positive.  The kids and I are now perfect in her eyes… according to her memory they have never misbehaved and I have never disagreed with  or annoyed her.

She also sees herself as approximately 5 years younger than she actually is. When I try to convince her of her current age, she believes me but has a hard time wrapping her mind around it because “we don’t look like we have aged” from five years ago.  She is certainly bothered that she now has a baby but has no recollection of the pregnancy.  The rest of her memory deficits are taken in stride and her attitude is excellent about her limitations.  She even makes jokes such as “I probably won’t remember that anyway” to lighten the mood at appropriate times during visits.

The  nursing home was only meant to be a temporary stop on her recovery journey.  Many people go there when family is too exhausted to continue caring for them in the house, but one not need to be elderly to require nursing home care.  Its purpose for us was to give Jessica the time and activity needed to strengthen for inpatient rehab.  She has strengthened enough to handle more therapy and we’ve begin pushing for the move.

Choosing the rehab placement a weighty decision, much like choosing a new home.  Despite the amount of time and energy expended in day-to-day management and encouragement, finding the rehabilitation unit that best meets our needs is now job #1.  Every one of her possible placements vetted and compared to the nth degree.  When we’ve settled on the one that works best for us, we will sleep soundly knowing that she has the best chance to make the most gains.  The rehab placement will likely be the longest and most memorable stop in her recovery journey.  My family is eagerly awaiting her new placement and all the healing that will take place there.

 

Help Offered > Help Needed  (A wonderful inequality)

Jessica feels loved and cared for at this time.  I appreciate all of the effort that everyone has made to make this time easier for me and my family… no matter how big or small.  We feel incredibly blessed to have family and friends who are willing to step up and meet all of our needs.  It is important to me to personally include as many people as possible in Jessica’s recovery, and I have tried to accept any bit of help or effort that would make our lives easier or better.  However, the magnitude of help we have been offered is more than we would ever need.

I know that there are people out there who might regret not being able to do more to help us.  Please rest assured that Jessica has had excellent support all the way through and my family truly did not need any more at any point during this trauma and recovery.  This experience has reinforced our belief that we just need to trust in God for some things and that the tasks we are (all) given to do will be within our capability. Obviously we are all human and there have been some stressful days where I have worried and haven’t slept well.  In general, my family is at peace and has no trouble getting to bed no matter what happened during the day. Your help has played a part in making this happen… and I will be forever grateful.

 

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