We are traveling on a very tough road at the moment.
The last several days have had some amazing moments but there have been many challenges as Corey continues to work through her disorientation and volatile moments. She has an extreme sensitivity to sound. She gets very upset when she hears motorcycles, children screaming and the common restaurant noises that we tune out.
Corey tries hard to balance her participation in outside activities while coping with overload from the external stimuli. She is keenly aware of every aspect of her environment. For instance; when we were in the ballroom of the conference center, she not only listened to the multiple conversations at our table but she was listening to the conversations at the surrounding tables, the dull roar of the 450+ attendees throughout the ballroom, the smells, the waiters/waitresses milling about and clanging plates and china, the power point on two large screens and the keynote speaker at the dais speaking above the noise on a microphone.
Although Corey’s outbursts have lessened during the day, the nights are still tough. Tuesday night Corey fell asleep a little after 9pm however she woke up at 3am. Unfortunately we had a new nurse that Corey did not remember meeting prior to her slumber nor did she recognize her surroundings. She was very upset and did not fall back asleep. She fought with the nurse for the better part of the night. Last night was similar but I was able to diffuse some of her anxiety so she could get a few hours sleep.
I met with Dr. Murphy at Bryn Mawr. He is the senior Psychologist and Behavioral Therapist at the facility. Unfortunately, there are no tried and true procedures to help us through this “phase”. Every TBI patient is different and so are their responses. Dr. Murphy cautioned that it may get worse before it gets better. Keep in mind, with the inconsistency of nursing over the last several months; I have been the most familiar face she sees. Her short term memory is non-existent at the moment. When she wakes up and is disoriented couple that with a strange face from a nurse that is here once a week trying to reassure her that everything is fine…she disagrees! The best we can do is take it one night at a time and try to help Corey feel comfortable so she can get some rest.
The good news our home care agencies are working with us to find staffing to create a consistent team of caregivers Corey can trust as much as me. It’s going to take time to find that balance. We need prayers for the right caregivers and patience for all!
Today our school team came to visit Corey. They haven’t seen her in 2 months. As you can imagine, they were very impressed with the progress she’s made since we’ve been gone.
We had another special visitor tonight ~ Uncle Tom the Great. Tom hasn’t seen Corey since Kerri’s wedding on St Patrick’s day. When he last saw her, she was trying to take a small bite of eggs and we held our breath that she wouldn’t aspirate. For dinner she had a scoop of mashed potatoes. Tonight she asked me to make Chicken Marsala, rice pilaf and carrots for dinner. Then we ran to the candy store to visit Caitlin and get some dessert. She out ate Uncle Tom!
We have to share another first that was a special appetizer only shared by Corey and her Uncle. The back story is Corey was a vegetarian for 6 years before the accident. He nicknamed her “meat” as he tried to lure her into eating everything from hamburgers, to sweet Italian sausages to Hot Dogs. She never relented.
Thanksgiving of 2009, her cousin Tom had a contest of eating a slab of peanut butter on a slice of bread. Whoever finished last had to eat the dare…Corey’s dare from Uncle Tom was to eat ½ a raw hotdog, Tommy’s dare was to eat 3 small dog biscuits. The video is on facebook but for those of you who don’t subscribe…Corey won!
Uncle Tom has been waiting to have a Hot Dog with Corey since he heard she passed her first swallow study. Well, tonight was the night (check out the gallery)
It was a fun visit, xoxo