Yikes, it’s November! I meant to provide another update in October but the time slipped away. There have been many moving things since my last post. And so much information to consume, not only about Christopher’s health but also the logistics surrounding his current and future care. To summarize the most important parts, he has emerged from his minimally conscious state and is conscious—has wakefulness and awareness. They determined this through serial neurobehavioral tests called CRS-R (coma recovery scale, revised), and it detects minor changes related to consciousness in groups of people that have suffered from a brain injury. While at TIRR, they diagnosed him with a more specific disorder that addresses his cognitive and motor deficits due to ADEM. They call this, cognitive-motor dissociation (CMD). In this disorder, there are often misdiagnosis of the person being in a vegetative state because of the presence of wakefulness but the inability to showcase awareness due to the motor deficits present. CMD is distinguished from locked-in syndrome (LIS) because a person with LIS has full motor paralysis. In Christopher’s case, the CMD manifests as fully consciousness but his inability to motor plan and execute movements are not always present, amplitude of movements not large enough, or noticeable to an untrained eye. The picture is complex but the end result is that he will need a significant amount of help for an indefinite (and possibly permanent) amount of time.

I personally have struggled with this and remain to have questions. How do they determine if his decision-making capacity is intact? Will there be a way for him to be in charge of the care he needs and direct it at his will? If decision-making remains off the table, how do we ensure that his wants, wishes, and desires are upheld above all else?

The medical team at TIRR Memorial Hermann are hopeful that he will be discharged on 11/11. What this entails continues to be a work in progress. I’ll write out the big list of items that  are constantly running through my mind and if there are things I missed, overlooked, or you personally can help with, please do not hesitate to reach out and let us know. We are open to all the useful help we can get from this community.

The never-ending to-do list: