Recovery from a TBI (Traumatic Brain Injury) – there is no quick fix!

As parents, when our children scrape a knee here, an arm there, we bandage it with care, dry their tears, and make chicken soup. Unfortunately, David’s injury was not that easy to fix. When he first arrived at the acute-care facility (within the rehabilitation center) in early November, we thought it was the light at the end of the tunnel. We were anxious to see David recover quickly, we celebrated the smallest indication of improvement. At first, he did, but by Thanksgiving we weren’t so sure what was happening to him and were a little more than disappointed.

The monthly CLIENT ASSESSMENT REPORT provided by the facility did not indicate there was anything wrong and they went ahead with plans to return him to the hospital in early December. He would have a second craniotomy to repair his ‘bone flap’ (the portion of his skull that was removed during his original surgery that allowed his brain to swell). Over the next few weeks, we noticed that David began to digress back to a vegetative state. No matter how much we read and talked to him, or aggressively exercised his contracting legs and strapped him into leg braces, he was fading…

By the end of December, it was evident something was seriously wrong as his face drooped oddly and he was mostly unresponsive. My sister and brother-in-law stepped in to review his charts and noticed discrepancies on his CT scans. They quickly contaAcute-Carected David’s Neurosurgeon team to alert them as to his condition. Because of this intervention, David headed back to the hospital to have a VP shunt put into his head. Afterward, we learned that if this fluid (hydrocephalus) continued to build up around his brain, we could have permanently lost him.

David’s case managers changed every few months. We also felt them pull back, especially when we wanted to question things and we would often station ourselves in the hall outside their office. Once they appeared, they would say he had plateaued. We did not agree with their assessment! They were also in a continuous fight with his insurance company to justify his continued treatment there. In reality, if they didn’t see a certain level of progress, David would have to move elsewhere; did we have a place in mind? We simply couldn’t understand this mentality as we were clearly seeing progress. David’s insurance company assigned a case manager as well. We spoke often and she continuously reassured me that they would never kick him out.

Although the accident took his ability to speak and remember things, (due to amnesia and aphasia), David began to recognize us, often smiling and waving as we came to visit. It was during these times that we felt our effort was well worth it.

In the first book of the Whisper Mystery Trilogy, Ellen and her family had to rebuild their lives after tragedy struck. Because Ellen is a strong character, she met her challenges headlong. That’s how we saw things as a family. But it wasn’t just our challenge; it was David’s ultimate challenge. He would have to fight very hard to come back to us. This is also when we started to realize that our David would never be the same.

Decisions or Challenges TBI Families/Caregivers Must Make Early-on.

Our first decision was that David was NOT going to stay in bed the rest of his life and we refused to accept the doctor’s prognosis that he would never walk again or participate in life. Our first challenge was to find a facility that would be able to provide the 24/7 care he needed after being released from the hospital. He was not accepted just anywhere, and it was difficult based upon where and who would pay for his care. The closest Acute-Care facility to accept his medical insurance was located nearly 2 hours away. Although it was a long drive, it was within our acceptable parameters.

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The day David was transferred to the Acute-Care facility (November 9th), we were there to help him with the difficult transition. While I readied my camera…for a split second, David smiled at me and we knew he was ‘in there’, although the lights were dim, we also knew we would walk this journey with him.

During the following nine months, I was able to stay with my sister, who lives in South Florida. In-between caring for David’s 2-year old daughter, there were weekly visits to see him. On off days I called vendors from his company, contacted banks and credit card companies, to let them know about his accident and resolving any debt. Some understood while others were downright rude. I still can’t fathom why they couldn’t grasp the gravity of the situation. I often broke down while talking with them.

David had an inventory left over from his recording studio that was not sold prior to his moving and his dad organized and catalogued the equipment. He then advertised and sold all that he could and the remaining items were taken to the local e-Bay store where they were sold for pennies on the dollar.

Family is everything! Family is a critical element in our ability to care for David. Without them, I don’t believe we could have gotten where we are today. My sister and brother-in-law opened their hearts and home and willingly played a major role in our family drama. Because of their medical backgrounds, they were able to help us oversee David’s medical needs, checking CT scans, and monitoring medications.

My sister dove right in by keeping David as limber as possible, knowing that if his limbs didn’t stay pliable, they would contract. She often brought in cookies and brownies for the staff as a way to show our appreciation, bribing them so to speak so that they hopefully would keep a watchful eye on David.

In The Whisper Mystery Trilogy, the main character named Ellen is able to exceed through the strong efforts of her family. I learned firsthand just how powerful this combination is….you just have to let people help.

The Accident, and How it Was a Game Changer

It’s amazing how quickly a single event can totally change one’s life. One moment you are helping your son move into his new house, and the next you are camped out in a small hospital waiting room that you commandeered to stay close to the ICU (intensive care unit).

Thinking back, I remember the feeling of despair when we first arrived at the hospital. They sent us to a private room and someone spoke to us. I can’t recall what they said; I was in such a numb state, but I do remember the Neurosurgeon saying that the first 72 hours are critical, they will determine if David lives or dies. So we camped out down the hall and waited.

As the days slowly passed, I can’t tell you the number of times I stood at the 4th floor window looking out over the palm trees swaying in the South Florida breeze, pausing to pray and hoping that by some miracle things would go back to normal. We were inundated with such terms as TBI and traumatic brain injury, something called a VP shunt, the Rancho Scale of Coma, medications with names I can’t pronounce, and reality slowly began to sink in. None of us thought about what might transpire down the road. We had a short-term goal and it was for David to live.

As we moved beyond those foggy days, the feeling things were never going to be the same continued to grow. Although we never really discussed it, we knew we had a challenge ahead of us. I always thought that David would snap out of his coma, laugh at the contraptions on his legs, and ask what the heck happened to him, but he didn’t.

After a couple weeks in the ICU, David spent several more weeks in a step-down unit. During this time we saw sparks of life when his hand moved, a fleeting glance or stare that let us know he was still there, trapped in a body that he was unable to control. At this juncture, the resident doctor made his prognosis that David would never walk again; in fact he felt that what we saw, was what we will see in the future. He even refused to accept him into their rehabilitation facility. He was just too unresponsive.

David was now facing the hardest journey of his life. It was then that we decided to take this journey together as a family. We will take each day, each challenge, and each decision…one at a time. In a blink of an eye, our game of life changed….we moved from a planned and comfortable retirement, to active caregivers, business liquidators, and bankruptcy agents, all while learning what TBI means.

This experience has provided me with a great deal of insight about what a person/family goes through when confronted with a tragedy that literally changes their life. In the first book in The Whisper Mystery Trilogy, titled The Ancient Whisper, I equate this time to the dream-state that my character experiences. As the story unfolds, she has to make some compromises and decisions while faced with unsurmountable odds. Just like this character, we began our journey with many questions. Where do we go from here? As the process evolved, we searched to find the answers.

Introduction

David's journey begins after 2-week ICU
David’s journey begins after 2-week Intensive Care Unit

Hello, I am M. A. Appleby and I am just starting out to blog about my family’s journey after my son suffered a traumatic brain injury. A journal I kept the first year of his recovery became the basis for a series of books I am writting called The Whisper Mystery Trilogy.

In my furture blogs, I will relate how David is recovering and how we, as caregivers, deal with everyday issues. As he recovers, writing became cathardic for me by allowing me to regain my ‘sense of self’.

What we found…is that you are not alone in your journey. You may want to visit my website to see how we are doing and what’s up with my books. www.maappleby.com