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.

Thursday, November 24, 2016

Today, Ben and I spent Thanksgiving together. Jim and I were called the day before Thanksgiving with the news that Ben’s mental state had deteriorated over the previous 48 hours and that he needed another brain shunt revision. His CT scan once again showed signs of increased pressure. Surgery for shunt revision was performed successfully last evening. Ben was somnolent and minimally responsive for much of the day today as a response to anesthesia, medications, and stress. I was concerned that major ground had been lost again in his recovery. We have been down that road many times. Later today however, he cracked a joke or two with the doctors, watched a hockey game, and spent some time looking at magazines. Ben seems ok tonight. I believe tomorrow will be even better. 

Because Ben’s brain was injured by status epilepticus, (continual seizures) in June of this year, he is climbing the slow road to recovery again. Both physical and cognitive milestones were lost, especially heartbreaking because of how hard Ben has worked to recover from the initial brain injury 4 years ago.  Ben is tough, though, and things are getting better.  He has moved from his wheelchair to walking independently again. He is even playing a bit of basketball. Language, both speech and understanding, have been affected significantly by July’s seizures.  Even in these areas, Ben is 100% better than he was a month ago. He has a tremor that slows down his fine motor skills which I believe is medication induced.  The neurosurgeon is encouraged by the result of the surgery today and a new neurologist has stopped the troublesome medication. 

In addition to physical and cognitive recovery, a major concern right now is once again discharge options for Ben. The hospital where Ben was staying prior to the current hospital admission feels that he needs more physical therapy, occupational therapy, and speech therapy then they can provide. This hospital does not plan to let Ben come back.  We are in limbo once again and need prayer for a therapeutic discharge option to open when Ben is better. Ultimately Ben wants to move back to the home living situation where he thrived for over two years, but he is not ready for that yet.

It is sometimes hard to hope when dealt set back after set back. Today I have had a few rough moments. Psalm 43:5 says, “Why are you in despair, O my soul? And why are you disturbed within me? Hope in God, for I shall yet praise Him, The help of my countenance and my God.” I started with praise today. Praise for Thanksgiving Day. Praise for what God has done for us. Praise for what God will do for Ben in this place. I will delight myself in Him and He will give me the desires of  my heart. (Psalm 37:4) That is a promise I claim. I just spoke with Ben’s wonderful nurse. Ben’s story is moving and I believe it speaks to people. I pray it points them to God. Perhaps this struggle exists so Ben can visit every single hospital in Colorado to meet as many people as possible. I HOPE not, but there are days when I wonder. No matter what….it will be good.