The purpose of this blog is to show how faith, my professional training and a healthy sense of humor taught me and continues to teach me that Jesus Christ is always in control. I am a fellow learner as this journey for my child unfolds. My wish is that Ben's legacy gives others hope where there seems to be none. It is also my desire that the information I have assimilated with my medical mind and filtered through a mother's heart gives practical ways to deal with this ever-changing chronic disease. Finally, for the many friends and family members who continue to follow Ben's life change after the injury, the story continues.

Tuesday, August 2, 2016

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.

Subsequent CT scans showed that the surgery was successful and Ben’s brain ventricle size returned to normal. In the hospital, he began to recover. Medications were not adjusted to what had worked for the past 2 years however, and Ben’s irritability and ability to think did not return to his previous baseline. He was miserable, locked in a hospital room with little  hope of consultation with a psychiatrist, neurologist, or transfer to a facility with the appropriate level of care.

After 2 weeks, Ben stepped out of his hospital room to speak to someone. The events that followed resulted in Ben being discharged from the hospital to an inappropriate level of care a few days later. Ben has a Texas court order that declares him legally incompetent. I am Ben’s legal guardian. The court order was in his hospital chart. The discharge happened when I was not there. The new facility was not informed about the court order.

In addition to  the TBI, Ben has a seizure disorder, is medically fragile and is on multiple medications which should not be stopped abruptly. That's is exactly what happened. He received none of his medications for 48 hours. By the time I could get to him, he was somnolent, no longer understanding language and seizing every 3-5 seconds. I was told by a social worker that he had been that way  for 2 days. I informed his caretakers what complex partial seizures look like and that Ben was in status epilepticus. In response, the facility took Ben to  the emergency room at a different hospital. By the next morning, Ben was in the ICU. Continuous EEG (brain wave) monitoring recorded continuous seizures for another 21 hours even with excellent care and seizure management. The seizures occurred off and on for another 3 days.

Ben is now 12 days into his ICU admission. He has lost much. Ben can no longer walk independently.  I believe his thought processing and reasoning are similar to where he was almost 2 ½ years ago. He has had regression in  language reception, language processing, expressive speech and muscle memory. The wheelchair that he has not needed for 2 years is back at his bedside. Ben’s fragile brain has taken a severe hit.

Today, however, is a new day. When I arrived at the hospital, Ben greeted me with a smile. I spent the day with him, encouraged by his progress. He is SO much better than I had expected. Last week he had no intelligible speech and had even forgot how to swallow medication. Today he is talking and able to walk with assistance. He can scoot himself around the hospital unit in the wheelchair.  All  the problems haven’t disappeared, but Ben is a fighter and I have hope for recovery. The worrisome behaviors seem to be gone. Ben has his joy back. This  hospital is FULL of amazing, caring, experienced and professional nurses and doctors. God is telling me that all is well in midst of this “storm”.  Please keep Ben in your prayers. An ideal situation would be a temporary discharge to a rehabilitation hospital focusing on brain injury to work on regaining what has been lost. Hope is confident expectation. It will be good.