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By: Eileen Hornback
On July 8, 2005 our 15-year-old son Zack was involved in a serious car accident and was Stat-flown to University Hospital, Louisville. When we arrived at the hospital, they told us he had suffered a traumatic brain injury and might not live. He had a large blood clot on the right side of his brain and a serious bruise on the left. They had to remove his right scull so his brain could swell or he would die.
The doctors gave us very little hope. We waited surrounded by family and friends who prayed with us. We were visited by two other brain injury survivors, Mark and Larry, who gave us hope through their stories of recovery. Mark brought me a notebook and encouraged me to write down what the doctors told us and I began a never ending list of questions. We learned as much as we could about brain injury, various treatments and therapy so we could be better advocates for our son.
Larry told us that his friends were instrumental in his recovery and to be sure Zack’s friends were able to see him. He also said that he had lost 3 months of his life, with no memory of that time and had no pictures, so I began a website and posted daily updates on Zack’s progress. We also started a photo album that enabled us to document his recovery.
The website diary became therapy for me as I was able to recap what occurred each day and could look back and see the progress Zack had made. We learned that the doctors don’t always have all the answers and we questioned why each procedure was done. It seemed that the doctors painted the worst possible picture so we came to depend on the stories from nurses and therapists who saw patients recover.
Our time in ICU was very difficult. We experienced great joy the day Zack finally gave thumbs up and wiggled his toes only to hit bottom again when he contracted an infection and stopped responding to all commands. We learned to take it one day at a time and gradually saw him improve. We were there talking to him, holding his hand and comforting him, even though they said he was not “awake”.
After 19 days in ICU he was transferred to Frazier Rehab, Louisville. This was not without a battle with the insurance company and doctors’ advice to look into nursing homes. I had read enough about brain injury to know that the sooner therapy was started the better chance for recovery. So we fought to get Zack into Frazier. We believed that the doctors saved his life but therapy would give him his life back.
Zack arrived at Frazier and was assessed at a Rancho Level 3, which means he was unable to consistently obey verbal commands, walk, talk or even hold his head up. He was fed through a tube placed into his stomach, had a trach, a catheter and was still fighting infection. This did not prevent the therapist from diligently working with him twice a day. Two days after he arrived he spoke his first word. One month after his accident they had him walking with assistance and he was finally able to eat his first meal.
Through all this time his friends were visiting every day and providing him with encouragement. They were the ones who finally got him to smile again. We were supported by friends and family who helped to care for our other three children, did laundry, cut the grass and prayed with us daily.
Zack did not follow the typical recovery phases of most survivors of traumatic brain injury. He was never violent and rarely aggressive. He “woke up” slowly, seeming to be slightly more with us each day. I stayed with him throughout the day until he went to sleep at night. I went with him to therapy and learned what they did and why. I also learned why each medication was prescribed and the potential side effects. This enabled me to talk intelligently with his doctors and therapist. When I had to return to work I had a close friend or his grandmother come to stay with him. This was not required but we felt the more involved we were in his recovery, the more we would understand his injury and be better advocates for the right therapy.
Once Zack began talking he was diagnosed with aphasia, a language disorder in which he could not recall the names of very common items. After they got him eating solid foods his speech therapist worked with him on naming objects and completing sentences. There were times when he became frustrated and seemed to cry for no reason. But then he learned to laugh again and it was a full belly laugh that lit up his whole face. His personality was developing and we noticed he still had his sense of humor.
Traumatic brain injury can alter your personality and we were warned that we would not get the same son back that we had before. Initially this was very difficult to accept, especially for my husband Scott. He liked the son he had before the accident, but we discovered that different didn’t have to be negative.
Zack became very affectionate, hugging us often and extremely polite, opening doors for everyone. Unlike the self-centeredness we were warned about, Zack was very concerned about others feelings. We were also told he might be withdrawn but he was very social, enjoying visits with his friends. We feel this was due to the fact that his friends were with him everyday, even when he was not able to talk or move on his own. Because they were using playing cards in therapy, we started playing card games with him in his room. Zach began hosting card games for his friends when they visited. We felt it was very important for him to socialize with other teenagers and encouraged their frequent visits. It was also good therapy for us to see him interacting with his friends and we knew that the more they knew about brain injury, the easier it would be for everyone to accept him when he returned to school.
Zack remained an inpatient at Frasier Rehab for 66 days. When he was released he was a Rancho Level 6. He no longer had a feeding tube or a trach, was walking unassisted, communicated his needs 85% of the time (even though he had fluent aphasia) and could write his name and simple sentences. He was transferred back to University Hospital to have his bone flap replaced and finally came home on October 9th (3 months after his accident). We were blessed to be able to take him to church the day he was released from the hospital and then had a homecoming party for him with all his friends.
He started outpatient therapy at Frasier East on Monday October 10th and continued his speech and occupational therapy. His therapy included sessions with a psychologist twice a week where the focus was discussing his deficits. He made great progress at Frasier East and they were surprised that he could recognize his deficits yet show no signs of depression. Zack had a positive attitude and one of determination to get back to school. In speech therapy they worked on his reading ability (he read very slowly and initially had difficulty with 3rd grade material). In occupational therapy they reviewed the driver’s manual to prepare him for the day when he could take his permit test.
On February 30, 2006, Zack retuned to school two days a week, taking four classes and working with a tutor in Rhythmic Writing and Instrumental Enrichment (two programs that help with cognitive rehabilitation and developing new pathways in the brain). He will have to repeat his junior year but based on the progress he has made in such a short period of time, his positive attitude and determination, his continued therapy and many prayers, we expect him to graduate high school and go on to college.
How blessed we feel that we will be looking for colleges instead of nursing homes. We know that he can accomplish anything he really wants to do; it just might be a little harder. We have seen in him a depth of character not found in many adults, much less teenagers. He has a deeper appreciation of life and we learn from him every day, how to be happy in any situation.
My advice to families is to remain positive and get involved. Stay involved in treatments, surgeries, medicines, and therapies. Attend therapy whenever possible to understand what is being done and why. Ask therapists for activities that you can do in your loved one’s room or at home to aid in the recovery process. Accept help from family and friends. They don’t always know what to do but they really want to help. Let them clean your house, take care of pets, cut the grass, baby sit, do your laundry and grocery shopping. Be sure you take care of yourself because you will be of little help to your loved one if you get sick or emotionally exhausted. Be an advocate and learn how to negotiate with the insurance company. Many times you may be turned down for a drug or therapy but appeal and appeal and appeal, until you get them to agree with the doctors and therapists. Try not to look too far into the future and take it one day at a time. Don’t focus on what you think you have lost, but instead focus on the immediate needs of your loved one and the therapies that will help them recover. Trust that changes don’t always have to be negative. Our faith was the biggest comfort and gave us strength to face each day. Through prayer we felt much was accomplished and it gave us a peace that passes all understanding. Now more than ever you need determination, encouragement, hope and faith.
You can follow the recovery process chronicled on our website at www.zaxcumbak.blogspot.com.