Feb 18, 2021 Latest post:
17 hours ago
We are using this Caring Bridge site to keep family and friends updated in one place. Cole was brought into the Emergency Department of Christiana Hospital on January 12, 2021 unresponsive and in a coma. We might never know exactly what happened on the evening of January 11, 2021 that made Cole become unresponsive. With all the tests and studies that Cole has undergone this past 5 weeks the neurologists and neuro-radiologists diagnosed Cole with acute leukoencephalopathy, restricted white matter diffusion of bilateral cerebellar hemispheres, anoxic/hypoxia brain Injury. Cole was on a ventilator and in a coma until January 22 and then he was successfully extubated on January 24, 2021 and was able to speak (albeit in a super hoarse and quiet whisper). He knew his name and birthdate and he recognized me (his mom)! It was a wonderful day! Cole has had some extremely complex medical problems as a result of being “down” or unresponsive for over 12 hours the night of January 11th and has seen practically every specialist known to the medical world. Everyday he was improving and seemed to follow more and more commands and had purposeful movement and recognized his friends and family looking at pictures and also on FaceTime. The hospitalists were arranging for Cole to be transferred up to Bryn Mawr Rehabilitation Hospital as they specialize in brain injuries and we feel confident this is the best place for Cole to have the best recovery possible.
Then on and around February 6, 2021 Cole stopped talking (except the occasional “F**k” when he was turned or poked with needles) and stopped following commands. He started to develop Clonus and Myoclonus shaking (can be a side effect of acute leukoencephalopathy) sometimes a mild hand tremor and sometimes more violent shaking. He has struggled with multiple forms of neuro-storming which can be spiking fevers, tachycardia (his heart rate sometimes can be in the 160-189 bpm range for extended periods of time) and he gets all sweaty and appears just miserable. He had a chest tube drain placed into the sack surrounding his left lung to drain a moderately large pleural effusion. The drain was removed 5 days later after getting most of the fluid out. Cole’s biggest struggle at the moment is still the significant neuro storming he has. Getting him medically stable with this is quite a struggle and will be a long process of trial and error regarding his medication changes. We just don’t know if and when Cole will be ready for acute rehab AMD where he will be accepted. This will be a very long road to recovery for Cole. The brain can take a very long time to heal and doctors can never give us any guarantees on the chances of Cole making a mild or full recovery. I’ve posted videos showing some of the journey he has made so far in recovery from the first few hours in the ER up until now. These videos are under the JOURNAL tab of Cole’s site and also you can click the Read More Journal Entries button to read and watch additional videos. I’m trying not to post the more hard to watch videos of his healing process as it can be heartbreaking at times. Obviously, as his mother, I’m fully immersed in Cole’s health journey and am literally here at the hospital with him every moment I can be.
Thank you so very much for all the prayers and positive wishes. Obviously it has been very hard to return everyone’s calls and texts to update everyone so I’m hoping this site will be a helpful link to knowing what is currently happening with Cole. Cole is a strong (albeit stubborn) fighter and I’m very hopeful he makes a strong recovery.