Hi Everyone,
We interviewed a new Neurologist today. Dr. H spent two hours with us; that in and of itself is amazing. Dr. H wanted to know about Corey’s history prior to the accident, the details of the accident, the time spent in the ICU, the time spent at Bryn Mawr, her seizure history, migraine history, overall medical history from birth to present, including all the doctors she’s seen and their specialties. It was the most thorough evaluation we have ever experienced.
Dr. H interacted with Corey asking her to answer his questions, describe her mouth pain, her muscle pain and briefly tested her cognitive abilities. We then had the opportunity to ask him questions about his background, experiences with TBI, experiences with rehabilitation therapies, medications etc.
The primary focus in today’s evaluation was to interview Dr. H to see if he could help us with serial casting, Botox or Nerve shots for her legs. What we disclosed was a man that understood that what we really need is a Doctor that will lead the team of physicians and their care plans for Corey’s recovery. Dr. H’s primary concern is whether or not he can be a ‘value add’ to Team Corey. The very fact that this was his primary thought was very impressive to us. Dr. H can handle the medications, monitoring seizures, simple botox injections but does not have the PT background. He does however have the network of physicians that he is personally friends with; including Corey’s neurosurgeon, primary care physician as well as the Dr’s that took care of her at Bryn Mawr.
One of the concerns I expressed was the disconnect for a patient leaving the acute care setting to transition towards their future. The primary complaint I hear from families, including ours, is the lack of direction and guidance towards short term and long term goals so the patient and the family members will have the proper expectations with the education and support they need to carry out the plan of care for recovery.
Dr. H agreed. In the acute care setting all the doctors and therapists work together in the same location. When a family moves to a sub acute or home setting, if the patient doesn’t go to Outpatient therapy immediately, the family is left not only to find all the players but to choreograph the plan of care with each player independent of the others. The families are often left “floundering” as to how to find, choose and then coordinate the support teams they need in recovery working towards a new life with their loved one post injury. Fortunately we are developing a strong team for Corey, but what about other families?
We decided to come back in a month for a second evaluation. During that time, Corey and I will interview another neurologist and meet with an orthopedic specialist. Dr. H is going to make a series of calls to Dr. Long, Dr. P (the doctor that gave the nerve blocks at Bryn Mawr) her past therapist and possibly her current therapist. He’d like to make his own plan of care and discuss how he might fit with our team for Corey’s recovery.
Today’s interview was enlightening. Every hospital helps the inpatient coordinate the doctors, therapists and logistics of scheduling, resources and education. What do families do as outpatients? Why are they expected to recreate the wheel? How is it possible that there is such little education, support and direction once the patient is discharged? How many other families are floundering? Personally, I’ve felt that surviving Corey’s accident has been more difficult than initially being called about it. The struggle to fight for insurance coverage continues to be overwhelming; but the search for continued care feels as if we are in the boxing ring blindfolded. There’s got to be an easier way…
It was a long visit for Corey but she handled it well. The highlight of the day was a visit from the kids tonight. When JohnPaul and Caitlin come out to visit, Corey lights up and doesn’t stop laughing. She’s not laughing because the kids are performing either…she’s laughing because it’s the only way she can express her excitement! We had a great night. Caitlin did do a little stand up and JohnPaul practiced some vowel sounds with Corey using an acoustics lesson. She mimicked his mouth movements. It was fascinating to watch her concentration and attempt to match his baritone voice; she actually changed her own vocal tones.
Corey everyday we learn something new. Try something new. Take a new step that shows new progress and connections. That’s the most important task we have right now to keep us moving forward. Days like today are long, tiring and can be frustrating but within it are moments of pure joy, love and laughter. I am always surprised to watch you at the end of the day; especially on a day as busy as today. You settle into bed from complete exhaustion yet you have a peaceful contentment that fills the room. Although I tucked you into bed, you covered me with a warm calming presence to help me settle from my day. Thank you! Happy dreams, xoxo