Coming Back to Life (2 Month Update)

September 3, 2010 by  
Filed under Our Recovery Journal

I cannot even imagine what it must be like to come out of a coma.  The first views of the world are blurry and confusing.  Surrounding voices contribute to the sounds of beeps and breathing devices.  Sensory overload from all directions.  Then, something familiar…  a voice.  Not just a voice, but the tone, inflection, and rhythm of someone close to you.  If every voice is unique, then certainly this is a voice that you have heard before.

I imagine that coming out of a coma is something like this.  It must be being complete confusion.  Most patients that do wake up do it gradually.  The first signs of familiarity in their world draw in their attention.  These signs are something to focus on in the confusion.  They are something to investigate further.  Something worth waking up for.

 

The End of the Coma

Five weeks is a long time.  It is enough time to completely gut and remodel a room in the house.  Enough time to complete a workout plan and lose those extra winter pounds.  Five weeks is enough time to complete the entire postseason in many sports.  It is enough time to see many major attractions in a large country.

For five weeks, Jessica slept and slept and slept.  Her vitals showed progress as her body began repairing itself.  It was enough time for many or her organs to begin functioning again.  Enough time for lungs, kidneys, and heart to bounce back and begin working consistently.

Coming out of the coma was a surreal experience for Jessica and her visitors.  Her first signs of life were fleeting reactions to voices.  Moments of clarity that pierced through her otherwise unconscious existence.  These moments were difficult to manufacture, and often occurred when a new person entered the room.  In Jessica’s case, there was often only one chance to make a first impression.  She may have appeared to respond to my voice when I entered the room, but repeated attempts at communication were met with the same blank stare that covered her face the rest of the day.

Days later, moments of consciousness lasted longer and felt more real.  It wasn’t long before she would scan the room at the entire family of voices who all sought her attention.  She began to process information and demonstrate her satisfaction with sly smiles.  While they only lasted for a second, these smiles provided a world of information.  They gave us hope that she could think and understand, but they also reminded us of just how far she had to go.  Jessica’s stroke had paralyzed her entire right side.  She could not move her right arm or leg.  In fact, she could not move anything to the right of her midline.  Nothing made this fact more obvious than her smile.  The left side of her mouth curled up, but the right side stayed put.  We didn’t care… we were happy that we could provide her something to smile about.

 

Adjusting to Consciousness

Consciousness became a more regular part of Jess’ day as time went on.  Fleeting moments of brain activity were extended to sessions where she would be attentive for a while… and then fade into what looked like a statue.  Sometimes the statue would stare blankly, while others included closed eyes and the appearance of sleep.  Full attention might come someday, but right now Jess was simply able to conjure up attentiveness in response to a question or an action.  Within a matter of days, Jess could keep her eyes open and even began to attempt spoken responses.

It has only been a few weeks since Jessica regained consciousness.  While in the coma, the majority of her movements were “involuntary” where she would swing her arms and legs with no purpose.  Now she is able to say some words, make an attempt to put on her own glasses, sit in a chair for 15-30 minutes, and answer yes or no questions.

 

Setting of on a Quest of Recovery

One of the first developments in her newfound conscious was that Jessica began to swallow and protect her airway.  Continued progress will allow for the removal of her trach.  The oxygen hose that was connected to the trach was a constant irritation because of the worry that it might be disconnected.  Now Jessica has progressed to the point where the hose is no longer needed.

The girls love giving Jess water on a sponge and bringing in items for her to identify.  It is difficult for her to remember the word that defines each item. The thing I am most proud of is Jessica’s willingness to do as much work as she can possibly handle in therapy.  Although lifting legs and holding steady isn’t much of a workout for you or me, it is infinitely more than what she could do just a few short weeks ago.

The purpose of the step-down unit is to allow patients the acute care that is needed to help them heal.  These patients are the lucky ones from the ICU… the fact that they are now here means that they survived the initial experience.  In Jessica’s case, her vitals improved steadily as organs began functioning properly again.  Now that she is out of the coma, therapy services have been added to her daily routine.  She can’t do much therapy right now, and what she can do requires a lot of help.

Her workouts last about 15-20 minutes of active exertion.  The therapists take the lead as I am hesitant to have her sit up or move around too much.  Without spotters, she could easily lean too far and lose her balance.  Her health situation is so precarious right now that a fall or a light head trauma could do significant damage.

The rest of the family helps out by providing opportunities to make connections.  Major activities include conversation, familiar music, items from the house, stretching, and anything else we can think of that might trigger memory or movement.

Having contacts in the medical field is a great help.  Family & friends with medical backgrounds stop by to assess patient care and progress.  They provide peace of mind by giving insight into the medical part of the recovery.  Something as simple and avoidable as bedsores can result in additional stress and complicate the treatment plan.  When nurses visit regularly, patient care issues can be spotted quickly and addressed before they become a problem.

Knowing that Jess was making progress gave us hope.  This placement is meant to be the second step in a significant recovery.  The stay there normally lasts for exactly 30 days.  The step-down unit requires that a patient be a little more independent than they were in the ICU, yet it still provides all of the services needed to ensure appropriate care of a very sick patient.

 

The Bigger Picture

When Jess moved out of the ICU and into the step-down unit, her future was uncertain.  She was in a coma and the new unit was a place that could meet her complex medical needs while giving her time to strengthen and recover.  As she gradually woke up and gained consciousness, her focus shifted from pure survival to recovery.  Therapy was introduced to assess and strengthen her physical and mental capabilities.  A constant stream of visitors worked Jess out and stretched her unmoving limbs every day, hopeful that the stretching would make her therapy easier when she eventually woke up.  Once she did come out of the coma, Jess was challenged to interact with all the visitors who frequented her room.

The physical and mental gains came quickly.  During her first three weeks of consciousness, she went from being a confused patient to a motivated survivor.  In a perfect world, she would recover enough function to go straight into an intensive rehab program.

While Jess was able to perform some movements, she could not stand or take a step independently.  Her current level of function would not meet the approval of the insurance company.  It was probably for the best anyway.  Like the step-down unit, there are only a limited number of days allotted for intensive rehab.  She would have to leave the step-down unit and bide her time in a skilled nursing facility.  Intensive rehab would be there for her when she was ready for it.

 

An Accelerating Recovery Introduces Doubt

Like most husbands, I often give my wife a hard time about changing her mind.  I have learned to be flexible when it comes to dinner plans and activity schedules.  In all honesty, this flexibility is difficult for me.  There is comfort in having a plan that includes where we are going and what we are doing.

During the last week in the step-down unit, Jessica’s progress began speeding up.  As her brain continued to recovery, her overall trajectory took off.  Strength and control developed and she seemed to be doing a little more each day.  This was fantastic in so many ways!  In fact, it was so fantastic that her doctor revisited her opinion and recommended sending Jess straight to intensive rehab.

While Jessica was not able to do everything on the intensive rehab checklist, her doctor felt that her trajectory was enough to warrant an exception.  Phone calls between the doc and (insurance company) placement coordinator were completed in a tone of heated disagreement.

Last minute consideration of a new direction in her recovery is great in theory, but in practice it was actually pretty stressful.  Tough decisions are an unfortunate part of life as a caregiver.  When there are two options that both seem like good ones, it is not easy to choose one over the other.  Thoughts like “what if I choose wrong” can haunt you and make it that much more difficult to sleep at night.

As often happens in significant medical decisions, the health insurer played the role of God and made the decision for us.  Although the doctor felt strongly that Jessica could handle impatient rehab, the insurance company disagreed.  She was denied inpatient rehab and would be heading to the nursing home after all.

 

Next stop: Nursing Home

Although our spirits had been encouraged by the possibility of going straight to the rehab unit, I personally felt that Jess’ time would be best spent gaining strength before using her rehab time.  She would continue to make progress and then eventually go for rehab when she was stronger and could utilize her time there for the maximum possible benefit.

Moving day arrived quickly.  The ambulance arrived to pick her up and we anxiously loaded up.  The weather was as perfect as possible as I followed the ambulance to the nursing home.  The bright sun shone on us during the drive, and it felt like God created this day for us to be as welcoming as possible.  Jess was admitted to her new placement but uncomfortable in her new setting.  She had become accustomed to the step-down unit and was nervous about adjusting to a new life in a new location.

I look forward to her continued improvement.  She is outdistancing every prognosis that was given to us at this time.  For an amniotic embolism, the chance of trauma survival is very low.  Various sources estimate it at anywhere between ten and twenty percent.  Even after survival, Jessica was given a low % chance of ever “waking up” mentally, physically, and emotionally.  At this time, she cannot stand up or even move her right side.  She is often frustrated that she can’t be home and participate in our lives.

On the other hand, she does understand that she is lucky to be alive and making progress.  Her #1 goal is to continue working until she is well enough to move home.  We have faith that day will come.  It is a day we are all looking forward to!

 

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