Home Sweet Home (5 Month Update)

December 4, 2010 by  
Filed under Our Recovery Journal

Home should be a place where everything is familiar.  It should be a place where everything makes sense.  One should have the opportunity to relax and unwind.  It is the one place in the world that can be arranged and rearranged to suit the particulars of our current lifestyle.


The Reality of Discharge

After four months in the hospital, Jessica was finally discharged to the home.  The homecoming news was music to her ears, but to me it was a terrifying thought.  In many ways, discharge was a symbol of failure.  Patients in the rehab unit are rated each week on a sliding scale.  Tremendous progress is required in order to secure and additional week of rehab.  Although five weeks is a lengthy stay, the ever escalating expectations had finally surpassed Jessica’s trajectory.  She did not improve enough to stay there another week.

I would have been happy for her to have a longer stay in the rehab unit.  The full-time rehab schedule drove her to further progress and I had doubts that we would be able to meet all her rehab needs in our home.  Although I was excited for her to return to more normal daily interactions, it was hard for me to convince myself that the time had come for her to move home.


Finding Her Niche

During the past three weeks, Jessica was reintroduced to the chaos that exists in a three child home.  She would love nothing more to help out and be a full time mom right away.  At best, that day will arrive far into the future.  There is also a chance that we will never get to that point.  From the very first day in the house, we have structured all activity around Jessica’s therapy needs.

The rest of us have trimmed back our activity schedule and social life.  Furniture has been moved and some rooms transformed from their previous use into a place that encourages recovery.  Our goals revolve around Jessica regaining independence… eventually we hope to expand those goals by gradually adding more “mom” duties.  Jessica currently requires help to do even the simplest tasks.  Getting a drink, extending to grab a faraway object, and walking to the bathroom all require assistance.

The strides Jessica is making in recovery are slow, but they are steady.  The stairs are a huge obstacle, so the bedroom was moved to the first floor.  I set up the house so that each room could accommodate the wheelchair.  Every day became an experiment in finding a good balance between meeting Jess’ needs and encouraging her to try new things.

The experiments revealed that the living space of three children is largely incompatible with a mother in a wheelchair.  Life became very uncomfortable as we constantly bumped walls and requested that the kids clear a path.  After yelling “put your toys away,” for the millionth time, it was obvious that improving her walking was a top priority.

Therapists began coming to the house and walking became the primary goal.  Whether it was the extra practice or just a mother’s intuition, Jessica rapidly improved her gait and balance.  Soon she was able to make the trek from room to room with some help from her four-point cane and a spotter.  When she left the rehab unit, it was unclear whether she would ever be able to advance her stroke affected leg.  Jessica adjusted her gait and has since begun making small movements forward.  It will be a matter of time before advancing the leg develops into an automatic movement.

More confident walking is especially great since the shower is on the 2nd floor and the car is in the basement.  Taking Jess out the back door and wheeling her all the way around to the driveway to get in the car is a giant inconvenience, and one that would REALLY get old throughout the winter.

Upon discharge, one of the recommendations was not take Jessica up or down stairs.  Therapists hinted that when the time came I would need another adult to spot her.  During the past three weeks, she has strengthened enough that I am now taking her up the stairs with no adult help.  The only additional help needed is for one of the kids to take her cane up ahead of us.  By the way, I think that Jess is the cutest person ever to use a quad cane to get around.


A Recovering Brain

The first three months of TBI recovery are critical to determining what might lie ahead.  Once a baseline has been established, the next 6-12 months of mental and physical recovery are critical.  During this time the brain has the best chance of reconnecting around damaged areas.  The body’s maximum potential for healing also occurs as the brain learns to make new connections.

Jessica has therapists that come to the house throughout the week, and our #1 priority is scheduling the rest of her day to maximize potential recovery opportunities.  She grudgingly devours a pile of meds every day and does all the activities, stretches, games, puzzles, written pages, and workouts that she can handle.  We focus on activities that she can do well to limit frustration, but the main goal is to engage her brain.

The brain is an amazing machine with remarkable healing potential.  While dead brain cells cannot regenerate, nearby cells can make new connections and bring back the lost function.  Consistent and varied use of the brain provides opportunity to make these connections.  The thought of the brain learning how to direct muscle movement motivates us to continue trying new activities.

Jessica is justifiably getting tired of me as an instructor and we have begun inviting friends and family to come to the house and work her out.  These sessions are another way to differentiate activity and muscle usage.  Jess had trouble focusing in social situations, so a one-on-one interaction seems to work out best.

This whole recovery experience has taught her that life can sometimes be lonely and company is a gift to be cherished.  I have chosen several dates this month to ask friends and family to come and work with her.  My hope is that these session are productive for Jessica and for her visitors.


In Conclusion

We will be eternally grateful for everyone whose prayers and support have helped give us the best chance at the most positive result… without the support of friends and family I may have been forced to put Jessica into a skilled care facility instead of having her move into our home.  With your support I have been able to manage both Jess and the girls effectively.  Additionally, with your prayers both Jessica and I have been able to retain a positive attitude throughout even the most frustrating times that we have had to deal with during our first few weeks at home.

Our home has a different feel than it did before the trauma.  Instead of being set up for our family’s interests, it is now rearranged to allow for rehabilitation and recovery.  The hours are long and the days are monotonous.  Everything is an investment in the future as we trade today’s time and effort for tomorrow’s potential for a better life.  Whatever the final outcome, we want to look back on this time and know that we did everything we could to secure our best possible life.  We go to bed tired but sleep easy knowing we’re doing the best we can with what we have.


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