Corey had a good day. She is making some positive behavioral changes. In the evening I stay with Corey until she is truly asleep and then head to the dorm. She hasn’t had a night terror in two nights but her anxiety when she first wakes up (4-5am) is still present. The nurses call me when she wakes up and fortunately I’m just across the parking lot. By the time she begins to get upset I’m walking in the door to wish her a good morning.
We are trying to wean her away from me to go to the gym. The gym is very full; family members are not encouraged to attend the sessions with the patients due to the over crowding. Corey holds my arm/hand telling me not to leave her. We strategically place one of the aides at the door to greet her. She gets excited to meet new people. During introductions I try to slip out without being noticed to wait in the hall in case the therapists need to get me.
Corey’s separation anxiety throws me back to her pre-school days. When I would drop her off in the morning she would cry and cling to me for dear life! The teachers literally had to peel her off me. I would leave the front door and go directly into the side door to observe her transition through a one way mirror. I wouldn’t leave until I saw she had settled down and engaged in an activity. I’m not sure who cried more, Corey or me. Eventually she became acclimated and would wave goodbye before we hit the front door telling me it was time for me to go to work. I’m hoping for similar results here.
Corey continues to progress with her eating. She is not at all pleased with the bland diet ordered for her. I’m guessing the kitchen doesn’t realize that our little chef has a sophisticated palette! The calorie sheets showed she is only receiving ½ the daily count she requires. We will continue with eating breakfast, lunch and dinner but will supplement her daily intake with 1.5 cans of formula through the night to balance the nutrition she needs. She was receiving 3.5 at home in addition to her meals.
There are 4 levels of thickness a person can swallow. Max Thick, Honey Thick, Nectar Thick and Thin. Corey has graduated to Nectar. Thin is the goal. Jessica, Speech, is thrilled with Corey’s ability to not only speak but enunciate some of her words. One of her goals while we are here is to work on articulation and pronunciation as well.
The team at Bryn Mawr is not just for PT/OT and Speech. There is also a full staff of Doctors that follow Corey daily. Her most recent blood levels ran high for her liver enzymes. We are not worried yet but this is why it is imperative we watch her seizure meds. It’s been one week since we changed to the new generic medication. We need to keep a close eye on this one yet be careful not to tweak the cocktail too much because we don’t want to tip her off a seizure cycle.
I am also grateful to have Behavioral Therapists on staff. I will be meeting with them to discuss the challenges we have had at home. They can teach me some strategies as well as educate me on how to work with Brain Injury behaviors. This will be critical information to bring back to teach our home health nursing staff! There is not “what to expect when expecting” for TBI.
Corey has had more than a few moments of agitation coupled with disorientation tonight. She does not like the casts on her legs! She gets very upset, has leg spasms and is in pain; especially on the right side. We believe the right is worse because she has greater sensation on that side. She is very confused as to where she is, who I am and why we are here. The good news is today’s episodes were less than yesterdays…say a prayer tomorrow will be even better.
Coming back to Bryn Mawr on the TBI floor is definitely different than the first time we arrived. In some ways it’s much easier because we know what to expect. In many ways it’s more difficult because we are “living” with the many levels of TBI first hand. Spending time on this floor certainly puts life and it’s blessings into perspective regardless of how those blessings manifest themselves. Sometimes the greatest blessings go unappreciated until you see what others are given. It’s up to us to recognize the beauty of the gift we received. See it, appreciate it and spend each day living the life you have.
Tonight we were told sad news and would like to ask for a prayer. Not for us but for one of the families we knew during our stay. They arrived shortly before us and were discharged this time last year. When they moved home we lost touch except when we would happen to cross paths for follow up visits. He developed complications after one of his surgical procedures. Rest in Peace Robbie, xoxo