John’s sisters, niece and nephew came to visit today. We had a good visit and the family enjoyed seeing Corey. We visited, ate dinner on the deck and shared stories and a few laughs. They naturally have many questions about Corey’s current progress and future prognosis. Reading the carepage and our reality are two very different perspectives. It’s often difficult to describe a “day in the life” to fully understand what it’s like. I deliberately choose to share some of the clinical and most of Corey’s achievements on the carepage to keep the energy positive and motivating for Corey and me.
Just like you, each night and morning I sign on to read the carepage but my focus is on all of your notes. I am especially grateful and would like to thank the families that are on this path ahead of us. They have reached out to encourage and support us on the good days and the bad days. Our life was going according to “plan” and in an instant we are living a new life. These families (many of whom I have yet to meet) understand the minute that switch was thrown. In the beginning their words didn’t resonate with any meaning. Not that I wasn’t listening, it was due to the shock and denial factor in dealing with a traumatic situation. Now that the acceptance and healing have begun, I’m “hearing” them more clearly. I am learning the questions to ask, but more importantly I now understand the answers.
Many of you have commented, with gratitude, on how the documentation of our journey educates you on TBI and the process of healing and recovery. This is how I feel when other TBI families reach out to me so I can learn from them. The conversation with John’s family as well as reading the words of a local family tonight, made me think that perhaps I should describe a portion of a day in the life of Corey and her family.
So here it goes…
Last night at 11:45pm, our nurse cancelled her shift. Corey was tucked into bed, fast asleep and Nurse Mom pulled out the blow up bed to take her shift. Corey has to be rolled from side to side as well as have her skin checked to see if she needs a “change”. Preventing skin breakdown is critical. We don’t want bed sores! Any wrinkle from her clothes or sheets, or a soiled pant can cause an issue. She needs her vital signs checked at the beginning and end of each shift change. I set my alarm every two hours just in case I fell asleep. One noticeable improvement since we’ve been home is that Corey is sleeping through the night…even when we are rolling and changing her. Corey sleeps with special stockings on her legs to prevent blood clots as well as both her hand splints to help keep her hands flexible. Contracture and muscle spasticity is also a major concern. She is fed through a peg tube in her stomach and the feeding runs from 4pm to 8am everyday. Additional cans of food need to be added throughout the night. In addition, it’s critical to flush the tube through the night so it doesn’t get clogged and we need to flush during the day so she doesn’t get dehydrated. The volume of water added also has to be balanced so we don’t flush too quickly. To much water too fast will cause vomiting and then there’s the fear of aspiration.
In the morning, Corey gets the majority of her medications and her shot of Lovinox (blood thinner) After she’s awake we start the morning with stretching and range of motion exercises for each limb for about 15-20 minutes. Then it’s up into her chair and brushing teeth. It’s important to do mouth care so she doesn’t develop thrush on her tongue. The bed is stripped and (1) of 4-5 loads of laundry begins for the day.
The rest of the day is filled with exercises for PT/OT. Because of the lack of therapy, we are ranging her left leg every hour for 10-15 minutes. Corey’s left leg has begun to show frequent spasms. For Speech she practices swallowing, humming, opening her mouth and we are always reaching/thinking of new ideas, techniques or use of tools to help Corey express her self. During a typical day, Corey alternates 3-4 hours in her chair and then 1-2 hours resting in bed. She has medication dosages mid afternoon, 6pm and then 10pm. Every other day is spa night which usually takes about an hour from start to finish.
One of the biggest challenges I have noticed since coming home is time management. Everything takes time. For example; Lifting her from lying in bed to a sitting position; sitting at the side of the bed then lifting her to a standing position; turning her towards her chair then backing into the sitting position in her chair. We then have to check that she is in fact properly sitting and reposition if not. Once she’s in her chair, each arm piece is attached; each foot rest is assembled along with the calf pillow. To transfer Corey from her bed to the chair could take 10-15 minutes from start to finish. If it’s after 4pm, we also have to transfer her feeding to a backpack on her chair. Let’s not forget the household duties of bills, dishes, cleaning and my own personal time/hygiene to fit into the day.
So here we are, 24 hours from the last post and look at all we’ve accomplished. It was another successful day managing our new life. The details of our day seem daunting when I reread them and think of the steps we take each day. But then I think of Corey and all she accomplished today. She exercised, worked on communication using new signs, went for two walks around the neighborhood, we read cooking magazines together, enjoyed our family, smiled, laughed and when it was time for bed, her head hit the pillow and she is sleeping soundly as I document another day. I know the details are the reason behind the gains she’s making, but I think sometimes the details don’t matter…Her smile does! Xoxo