Patient Content

Coping with a Traumatic Brain Injury – One Mother’s Story

  • AANS

Every parent’s nightmare is an injured child. Receiving a phone call telling you that your child has been in an accident resulting in a traumatic brain injury (TBI) is inconceivable, but that was my reality six years ago.

My son, Josh, was 24 when he plummeted 50 feet off scaffolding on a construction site, causing his TBI, diffuse axonla injury (DAI) and hypovolemic shock. He was given a less than 2% chance of survival and a Glasgow coma score of 3.

His injuries were extensive. He underwent multiple surgeries and received 22 pints of whole blood and 20 units of plasma due to 14 major arterial bleeders. He survived the initial 13 hours of life-saving operations and was placed in TLC. His many doctors included trauma surgeons, residents, pharmacists, neurosurgeons, cardiovascular surgeons and orthopedic surgeons.

Josh fractured 86 bones, suffered a torn aorta, lost right kidney function and had severe nerve damage and a rare disorder called neurostorming. In medical terms, neurostorming is caused when the autonomic nervous system (ANS), central nervous system (CNS), sympathetic nervous system (SNS) and para sympathetic nervous system (PSNS) have difficulty regulating after a severe TBI.

There is no doubt any catastrophic event changes lives. The ramifications cause a ripple effect that alters everyone involved. Trying to learn about and accept the situation assists in the coping process. As a parent who practically lived in the hospital for three months, I feel it is important to share my knowledge and experience with other caretakers.

The shock accompanying horrific news tends to outweigh reason. Understandably, we do not always absorb the information doctors are attempting to relay. Days after this kind of trauma go by in a blur of shock and sleeplessness. Take notes. Not only should you detail the names of each doctor, but jot down the basics – what type of doctor, possible care plan, as well as upcoming and future surgeries.

There will be thousands of questions randomly going through your mind. Every question is a good question, as each answer will help you to better comprehend the situation and give you the knowledge and skills to aid in your as well as your loved one’s recovery process. Some hospitals provide white boards in the room, which is an excellent way to post inquiries to health care professionals on the off chance you step away from the room. At times, there may be three different answers to just one question and those three perspectives are all important in determining the best future medical plans for your loved one. Jotting down potential options to make it easier.

Keeping lists of current medications is very important, but keeping track of newly introduced meds is equally critical. Medical professionals are trained to look for adverse reactions to medicine; however, the caretaker has constant face-time with the patient and may be quicker to notice complications. Inviting a pharmacist to explain medication dosage and contraindications is helpful to understand the purpose they serve.

Hospital staff are required to ask hundreds of questions, both personal and financial. It is vital to be truthful, even when those inquiries seem invasive. Answers provided can assist with.

Workman’s Comp, Social Security/Disability and medical coverage, including possible long- term care facilities. No one wants any coverage or claim delayed due to lack of information.

In crisis, your personal reality changes. One minute, you are a working person/stay-at-home parent/retiree, the next you are thrust into the role of full-time caregiver. Your life changes on a dime. Know that it is essential for your mental health to accept help from others. Whether it is a friend bringing outside food to the hospital, neighbors picking up the mail or driving kids around or sitting with you in the family waiting room for emotional support – accept it. You cannot take care of your loved one if you are run down or emotionally drained. As hard as it may be to think about yourself, you need to do just that.

Hospital policy is another aspect that varies with each institution. It probably would not occur to anyone that wasn’t going through a traumatic situation and practically living at a hospital to learn this information. Once the shell shock starts to wear off, asking questions about hospital policy can prove invaluable and save frustration later. In my case, I had no idea hospital personnel were not allowed to cut fingernails or toenails, cut hair or provide scissors to do so. Josh was in the hospital for three months and needed the construction plaster cut out of his hair, beard trimmed so it wasn’t matted in his c-spine collar and his finger nails and toenails trimmed so his nails wouldn’t curl when he eventually learned to walk again. These are small things if the hospital stay is less than two weeks, but for patients with TBI, hospital stays can take several weeks or months.

Time is another concept that does not behave in a logical manner when you are going through a life-altering situation. Time flies by. Time heals all wounds. Time stood still. Yes – all of that. Time ceases to exist. The only time is the here and now. When strong emotions are involved, it is impossible to have a realistic grip on time. I didn’t register the 13 hours it took for Josh’s initial trauma surgery. When the first trauma surgeon came out to talk to us at the five hour mark, time felt like it was flying by incredibly fast. My mind seemed to morph to another dimension, similar to a type of meditation. Know that these out-of-body sensations are normal in traumatic situations, they are there to help you cope at that moment.

Josh spent 10 days in a coma, three months in an altered state of consciousness, four weeks communicating with finger gestures and returned home from the hospital three months later. He went on to one full year of physical therapy, occupational therapy and speech therapy, walked his dog after seven months and married the love his life two years later. For a parent, even one day in the hospital is too long. Effective communication is the key to a successful hospital stay and to being the best advocate for your loved one.

To read Josh’s complete story, click here

Note from AANS

The AANS does not endorse any treatments, procedures, products or physicians referenced in these patient fact sheets. This information is provided as an educational service and is not intended to serve as medical advice. Anyone seeking specific neurosurgical advice or assistance should consult his or her neurosurgeon, or locate one in your area through the AANS’ Find a Board-certified Neurosurgeon online tool.