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.