Ben has been in  a season of struggle, loss, and medical decline. In April, he started having behavioral struggles  coupled with cognitive loss. Experience has taught Jim and I to push for assessment of the VP shunt,  which manages fluid in Ben’s brain,  when we hear reports of  any worrisome changes in behavior. Repetitive brain CT scans were performed as a response to the mental decline over the last 3 months. Finally, when Ben’s mental decline intensified,  he was admitted to a hospital for 2 weeks where many of his medications were changed. On June 11th, I visited Ben and became very concerned. Something was wrong. He was irritable, unhappy and mentally slow. The irritability moved to aggression and on July 2nd, Ben was taken to the hospital and placed on a mental health hold. We again asked for a brain CT scan. An astute neurosurgeon reviewed the scan and compared it to all of the scans dating back to April. Ben’s shunt wasn’t working and had not been working for a long time. He had changes in brain ventricular size and this means an increase in brain pressure. July 4th he underwent brain surgery for VP shunt revision.

I am writing this blog update as I sit on a delayed plane waiting to leave for Houston. So far the plane has been delayed 2 hours. Al least the view is beautiful here in Denver. I spent the weekend with Ben in Colorado. Our time together was bittersweet. We have not seen each other for a while. Ben has been struggling with significant physical and  mental health issues. After 2 years of health and stability, life became unpredictable. Ben was unhappy and frustrated. The frustration manifested in troubling behaviors that Ben seemed powerless to curtail. The wonderful professionals who run the TBI home where Ben lives, stuck with him through thick and thin, but they were at a loss as to how to help him. Services, medical and psychiatric, are a constant struggle for people who struggle with TBI. As soon as “brain injury” is brought up, doctors and hospitals back pedal as fast as they can.

February 22nd was Ben's 27th birthday. He celebrated by eating birthday cake and had a day of fun with activities and receiving calls and messages from friends and family. Social contact is what Ben loves best and he enjoyed every minute of the day. Ben still lives in Colorado. He still requires  a supportive environment that caters to the needs of a traumatic brain injury survivor.  Although Ben can do many things, he still has deficits in memory and needs monitoring in social situations. His problematic behaviors have diminished with good medical care and a supportive environment. He  is quite a character with a quick smile, a great sense of humor, and an eclectic fashion sense. Everyday I thank God for leading us to Colorado and for the amazing helpers that help Ben navigate his world.

Jim visited Ben in Colorado last weekend. He is still living in a beautiful Colorado suburb, attends church and like all of us, has daily victories and struggles. Ben has started guitar lessons. I am excited that he is eager to learn something new. He is practicing "Happy Birthday" to play for his dad's birthday next month. Ben has also developed an interest in cooking for the other residents of his house. It is a blessing for Ben to move toward any new goal, no matter how small.

My visit with Ben in Colorado last weekend was bittersweet. He has made progress in some areas but discouragingly slow progress in many areas of struggle.  I was reading this morning about the common problems for patients recovering from severe traumatic brain injury. Ben has everything on the list. Troubles with problem solving, impulse control, and self monitoring, short term memory, learning, and language retrieval are all there. Ben doesn't grasp the implication of a given action and his impulsivity may show up as verbal utterances, snap decisions and poor judgement. His irritability and emotional instability is much better on medication which is a blessing. The article on TBI sequelae perfectly states these changes by stating "an individual with TBI may have a vague sense that he is 'not who I used to be' and yet struggle to define the specific ways in which his personality differs from prior to the injury."
The article goes on to mention that for many TBI survivors, the ongoing needs for support are not being met. Through the grace of God that is not true for my son. He is in a marvelous place.

Last weekend, I traveled to Colorado to see Ben. Jim and I try to visit at least once a month. Medically, Ben has had a few set backs. Behaviors surface occasionally that need care, intervention and sometimes medication adjustments. He had just come out of a period of struggle and things were much better. I have learned through this journey with Ben that God will provide the road, the answers and peace. The director of the home where Ben lives honestly likes him. She feels his sense of humor and personality add  much to lives of the other people in the home. She feels like Ben is worth it. This may sound sad, but Jim and I have been fighting this battle for Ben alone for so long, to have someone fighting along side of us is such a relief and a blessing. And....of course God is on our side. Jim and I no longer panic when the wheels seem to fall off the wagon. Either God will fix the wheels or we find out that the wagon rolls just fine without wheels.

On Wednesday, January 27th I got in my car and made the 40 minute drive to Ben Taub Hospital here in Houston. It has been over 2 1/2 years since Ben was hospitalized in the neurosurgical intensive care unit at Ben Taub. I drove the familiar route and parked in the familiar parking garage, taking care to remember the floor my car was parked on. I have lost count how many times I had forgotten where my car was parked in this garage. Today, I was going to remember.  As I walked toward the front door of the hospital, passing people from all walks of life, it didn't seem like years had gone by since Ben's injury. Ben Taub cares for the indigent of Harris County in Texas. And because of it's excellent trauma center, it not only cares for the indigent, it also cares for the wealthy and everything in-between. The medical and nursing staff at Ben Taub is dedicated, skilled, brilliant, and overworked. When Ben was in the intensive care unit, an ICU nurse told me about patients that had walked through the doors of that unit to thank the professionals who had cared for them years after their devastating injury. The hope in her voice led me to believe that this didn't happen nearly often enough. Today I was there to tell them about Ben.