This carepage was created almost a year ago. It served as the single line of communication so we didn’t have to make a thousand phone calls. Initially I wanted to write to our family and friends to inform everyone of Corey’s progress. Each night as I wrote the update I would think of Corey’s friends. The accident was devastating to us but my concern was for all the kids that would be reading these pages. What were they thinking? How frightened they must be to “know” someone that was in such a severe accident.
Because of the nature of the trauma unit in the ICU and the emotional atmosphere of the Brain Injury unit at the rehab, Corey needed to be isolated. Unfortunately that meant her friends couldn’t see her to personally process what had happened and/or have any closure. The pages were a link to Corey. Sharing the clinical information would help to educate everyone on what the day to day activities, decisions and challenges were that Corey faced as she first survived and then began her road to recovery. Lessons learned from my mother inspired the positive outlook of the post. Mom had esophageal cancer. She used to tell me that she knew the grandchildren were scared and they were “watching” her as she coped with her cancer. She felt it was important to teach them one last lesson; “It’s not the challenge you face but how you face the challenge”. She had no idea it was the final lesson she was teaching me as well.
The carepage evolved as we began to cope with the greatest challenge we’ve ever had to endure. My focus quickly changed and I began to write for Corey. They say that people in coma’s can still hear and understand if their loved one reads to them. I wanted her to hear the progress she was making as well as the encouraging words from others so it wasn’t just what Mom was telling her. Consistent positive energy, confidence and optimism are motivating and these characteristics are as critical to Corey’s recovery as her daily medications.
It’s also important to deal with the honest emotions we are experiencing. Personally I believe it’s important that children know that even though their parent is an adult, adults can be afraid too. It’s okay to admit you’re afraid. Tonight we were both afraid.
I routinely call on my drive home to check in on Corey’s day. Angie, our nurse for today, reported that Corey’s day began well with Diane in her Speech session. However, late morning Corey hit an emotional wall. She was working with Gillian, PT, and had a complete melt down. It was her worst temper tantrum to date. She was furious because she didn’t want to just sit on the side of the matte, she wanted to get up and walk. Gillian explained that first she needed to sit then stand before she could walk. Corey wasn’t accepting that answer and she was inconsolable; the session had to be cut short. Angie reported the next several hours were extremely difficult trying to get Corey settled.
I arrived home in time to see Alice, OT, begin her session at 4:30. Corey was quiet and behaving. At 5pm, just as her session completed, Corey had a seizure in her chair. She began by rolling her eyes back then her head and eyes were fixated to the extreme left. Her eyes were slightly pulsating from right to left as her body began to twitch in the opposite direction. I remembered the seizure I witnessed back in March. One attending in the ER was in charge of calling to Corey to pull her out of her seizure. I instantly began to repeatedly call her name. I had to force myself to concentrate on making sure I remained calm so I wouldn’t panic and have Corey hear the fear in my voice.
The seizure lasted 6 minutes. After the first 2 ½-3 minutes, as I called Corey’s name, I asked her to look at me, I also asked her if she could hear me. Her right hand began to soften and she gave a thumb up. She could hear me but her body continued to seize. Angie explained that this is normal and it was a good sign she was beginning to respond with a thumb up. Corey slowly came out of the posture and her entire body softened. She was wide eyed and visibly exhausted. The left side of her face was swollen and appeared paralyzed. I tried to get her to smile and she was only moving the right side of her mouth.
Seizures can do additional damage to the brain. I was terrified that Corey may have lost some of the progress she’s recently gained. I asked her to try to speak and she did repeat, Mom, Home, and No. I wanted to see if her mouth could form the “M” and “O” lip movements she just recently mastered. My next test was asking her questions to test her neurological and cognitive skills. I handed her the dry erase marker and asked her to write her name, my name, did she have a dog, her name, did she have a cat, how many cats, what month was her birthday, what day in that month and what was her phone number etc. She correctly answered each question. By 6:30 she was in bed and fast asleep by 8pm. Her exhaustion and slumber is typical for seizure activity.
Corey and I talked before she went to sleep. She didn’t speak but gestured with a head nod to confirm or a head shake to disagree. I asked her if she was scared and she “said” she was. I told her I was too. She slightly smiled. I asked her if she felt the seizure coming on and she shook her head no. I asked her how she felt and gave her two options, achy or sore. She said both. I assured her that she was safe now and could relax. I would stay with her so she should close her eyes to sleep. Seconds later, she was out.
Honey I hate to say that seizures are another piece of what you will have to cope with but for now they are. I have read that they can occur because the brain is “reconnecting”. Sometimes those reconnections misfire and the “new wires” cross. When they do it can spark a seizure. The most important word in that sentence is reconnection! This is not a set back honey. Remember when you were little, you fell and scrapped your knee. We cleaned you up, put a band aid on the cut and it began to heal. Just as the scab was forming, you fell on the same knee and part of the wound opened. In a few days it began to heal again. Your recovery from the accident is more intense than the scrap on the knee but the message is the same. You continue to heal despite falling a second time.
We focus on One Day at a Time but remember that today will only last 24 hours, not forever. Remember your accomplishments and keep looking towards your future. You are just 18 turning 19. The big picture has yet to be discovered. Remember what Dedema used to quote from the Weaver prayer; the black threads are as needed as the Gold and Silver. Tomorrow we will hope we find the Gold and Silver spool. I love you Corey, xoxo