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Neuroscience Center Traumatic Brain Injury Advocacy Group

 
Tallahassee Memorial Traumatic Brain Injury Advocacy Group
Welcome to the Tallahassee Memorial Traumatic Brain Injury Blog. My name is Sheree Porter and I am a Speech Language Pathologist at the Tallahassee Memorial Rehabilitation Center. I am also the Clinical Manager of the Rehabilitation Center and the Neuro Rehabilitation Outpatient unit.

Read Sheree's Blog

Miracle babies. That’s the “professional” terminology I use to describe the Traumatic Brain Injury (TBI) survivors you’ll be meeting through this blog. Together with this group of amazing TBI survivors we have established the Tallahassee Memorial TBI Advocacy Group. This site is the culmination of our desire to provide education, information, support, and resources to survivors and their families after a TBI.

Most of the TBI survivors contributing to this blog are former patients of mine and each has survived a severe brain injury. One of the common threads that tie them together is their passion to help others. Each of these remarkable individuals practice what I call the “ABC’s of Success” --- they have positive Attitudes, they Believe they can help others, and they are Committed to that goal.

From the perspective of a clinician who meets the TBI survivor even before it is known if they will become a survivor, I have to say it is an amazing journey to observe, and actually participate in. The typical first visit to a patient with a severe TBI will involve many layers of discovery. My first observation will most likely be of the family. There are a lot of tears. A lot of praying. A lot of denial. A lot of looks of cautious hope. I’ll start out by helping the family to understand the importance of their involvement, especially in following the guidelines to minimize over-stimulation. The families always seem to soak up every word --- they are trying so hard to make it all “better” or in the words of one of our Clinical Social Workers, “not worse”.

Next, I’ll “meet” the patient. Most times, the patient will never recall this encounter. The patient is usually in a comatose state, whether they seem conscious or not. For me, this is a magical moment. The patient and family don’t realize it at this moment, but I know that we will most likely develop a very close bond that will transcend the current time. If I happen to observe a twitch, a flicker, a movement, it makes me perform internal cartwheels. It’s at this point that I know there is hope. I have to hold back a little – guard the family -- don’t give them any false expectations. I know the twitch or flicker indicates a good prognostic indicator for recovery, but I also know recovery can stop at any point. So, I have to protect the family at this point.

For the next few hours, days, weeks, & months we will spend a lot of time together. The patient will still most likely not recall much of the early days and weeks. But the family and I will. In the case of severe TBI, we will remember the agitation, the crying, the cursing, and constant repetition of information. During this time, the family will receive intensive education on TBI, and will learn about the Glasgow Coma Scale, Rancho Los Amigos Scale (more to follow in upcoming posts), retrograde & anterograde amnesia, short term memory, and the do’s & don’ts for visitation. My colleagues and I will spend as much time as necessary to help the family understand these behaviors are normal course during the recovery phase after severe TBI.

Finally, the “miracle babies” start to emerge with a vague recognition of faces, and a sense that they are not at home, school, or work. Information will start to sound familiar to them. Repetition will be reduced little by little, until the patient is independent at orienting to the day, date, time, & place. They will learn how to use memory aids such as day planners, alarms, and journaling as compensatory strategies for their daily activities. We will practice reintegrating them into society by going out into the community on practice runs. They will start managing money or cooking meals with their occupational therapist. Their physical injuries will continue to heal.

The best/worst/happiest/saddest day is the day the patient is discharged home from the Rehabilitation Center. It’s such a joyous moment, and I embrace it and dread it all at once. I compare it to the empty nest syndrome when you send your child off to college. You celebrate their moment of graduating to their future, and at the same time grieve for the loss of their daily presence. But fortunately for me, just like the grown child that’s flown the nest, I have been fortunate to continue in a post-rehabilitation relationship with most of my former patients and their families. I’ve attended high school & college graduations, weddings, cookouts, and exchanged many Christmas cards with these “miracle babies” and their families.

Over the course of our time together, I’ve watched them fight for their lives and for their thoughts to be reconciled to their own. I’ve watched their families perform what I call the hierarchy of prayers:
Please let them live
Please let them regain some former abilities
Please let them re-enter society
Please let them restore their health
Please let them be “normal” again
I’ve watched them emerge from the fog. I’ve watched them smile. I’ve watched them return home and re-enter their lives. I’ve watched the miracle unfold. I feel privileged to work with such a devoted and progressive group of individuals -- advocates.

I hope you will take the time to read each of the stories included in their personal blogs. In the future, we will be covering a variety of topics on this site and we welcome your feedback.

Most importantly, I would like to thank Chas, Alec, Kathleen, & Jake for their bravery and for sharing their (our) stories. I know after reading them, you will see that they truly are the miracle babies I described.