Hi Everyone,
It was a big day for Corey but an even bigger day for Caitlin! Happy 23rd Birthday! Although Caitlin worked today we managed to have a little cake to celebrate the day.
Now back to Miss Corey;
Her CAT scan and visit with Dr. Yalamanchelli went well (it took me months to properly pronounce his name! Yal-a-man-chelly). For those of you who haven’t been following our carepage from the beginning, he is the neurosurgeon that not only advocated for Corey’s extended rehab hospital stay, he also agreed to be filmed on the national Fox News piece last June (clip is posted on You Tube).
We have not seen Dr. Y or his PA, Shakira, since March of 2011. I remember sitting down with Shakira looking at Corey’s CAT scan, firing multiple questions; “looking at the scan which part of her brain was most affected? Can you tell if one side was more damaged than the other? I know you said it was going to be a long recovery but compared to other scans you’ve seen, is it 6 months, a year?”
Shakira looked at me like a deer in headlights. As I asked questions that I thought were appropriate, I could sense her panic. She was looking at me terrified. I knew by her expression she was thinking, “This woman has no idea the extent of her daughter’s injury”. She couldn’t answer me. I heard her silent thoughts and my last question faded, hanging in the silence between us. Shakira wasn’t saying anything. I looked at her, tears welling up in my eyes and stated, “You have no idea do you”? “You don’t know if she’ll ever come back to us”? She didn’t have to respond, I knew ~ no one could give any prediction. We had a diagnosis, no prognosis. The only positive comment was “Corey is young and we’ve seen progress with young patients”. That feeble attempt to console me wasn’t accompanied with the smallest hint of what the progress was or how long it would take. We left with the ambulance transport team and I cried the entire ride back to Bryn Mawr.
Today’s visit was much different. First of all, we drove ourselves. As Corey would say, her last visit she was a “lump of love”. She couldn’t walk, turn her head, speak, sit up or barely give a thumb up. Today she walked to the CAT scan machine and we sat in the waiting room snacking on apples as we looked through magazines.
We met Shakira first. She shook my hand but couldn’t stop staring at Corey. “She looks like a different person”! Corey looked at me, smiled and turned back to Shakira, “thank you!” Shakira was amazed. “How are you”? Corey confidently replied, “Great”! We caught up on her rehab stay, our move home and her recent progress as an out patient. She moved her arms, hands, and legs and told Shakira what hurt and where to find it on her head. Shakira was listening but couldn’t stop staring or smiling at Corey.
Dr. Yalamanchelli couldn’t wait to come in to see Corey. This is a man that is all business. I know the 5 times we’ve met, he never smiled. He took one look at Corey and couldn’t stop smiling. He was almost giddy! She answered all his questions appropriately and without delay. He looked at me and told me that seeing Corey today is exactly why he fights for rehabilitation. He was thrilled to hear her therapy schedule, diverse selection of therapy (including our music and cooking therapy) and amazed to see her move and hear her voice. The thanked us for coming in.
The clinical result of the visit;
Corey has a gap along the incision line. It is feels “sunken” in spots, the size of your fingertip. On 10/3, almost 24 hours after the accident, the bone flap (skull bone) was removed to allow the brain to mushroom (swell). December 10th it was surgically replaced. During the course of natural healing, the bone flap has ‘settled’ and there are several gaps. The CAT scan showed that there were 4 clips that keep the bone in place. The clips are still securely placed despite the gap/shift. This is very important and downgraded the urgency of any type of surgical action. If Corey continues to complain of pain and/or increased headaches and/or we notice the gap getting wider, Dr. Y can remove the clips, replace them with larger clips and fill the gap with ‘bone cement’. This would require a repeat surgery and we definitely DON’T want that, so let’s hope the gap doesn’t get bigger and Corey’s pain/tenderness improves!
PS; there was no sign of Hydrocephalus, a build up of cerebrospinal fluid inside the skull, which lets us know the programmable VP shunt is working and set at the proper functional number. The CAT scan also showed very little change to the initial damage sustained from the accident. That friend’s is an amazing statement. It means that Corey’s brain is reconnecting and creating new pathways to recall her long term memory, speech, ability to walk, swallow, etc. Prayer and the natural course of healing is certainly part of the answer but it is also due to the consistent stimulation/retraining she has received from the acute level of therapy post inpatient stay.
Dr. Y commented that there aren’t enough long term studies completed to prove to the insurance companies that this “theory” works. The studies often are not completed because most patients can’t/won’t or are aware they can appeal the denial decisions. Just imagine if every TBI patient could receive 15 hours of professional therapy per week with an evaluation of progress once a year instead of once a week. Most insurance plans cover 60 days length of stay for inpatient and 30 hours out-patient therapy. The brain controls every aspect of our ability to function. It is the slowest organ to heal. Our fight is to not only bring awareness to TBI but stop measuring a patient’s recovery with a stop watch!
Thank you for the added prayers and positive thoughts. It was a good visit and I think tonight I can sleep with one less worry trying to keep me awake! Happy dreams, xoxo