Family Medical Report

I went to visit our hospitalized relative over the weekend. His condition has been dropped a notch, and he has been moved. I think it’s still a form of intensive care, but I’m not sure.

When I entered the room, he opened his eyes and turned his head to look at me. That’s the first time anything like that has happened. His eyes were open a lot of the time I was there, but they didn’t seem to be looking at anything in particular. He still hasn’t spoken.

The brace has been taken off his neck. The bruises on his face are gradually fading. He is still intubated in all possible ways. He moans a little bit occasionally, and is obviously in great discomfort and pain.

I talked to the nurse practitioner about the results of his MRIs. Except for the fact that there is some brain damage, there isn’t much in the way of specific information, other than the fact that his brain stem was not damaged, which is good news. She said that after such a severe trauma, it will be six months to a year before we know for sure what the new baseline of his neurological functioning will be, including whether his speech will be permanently affected. Between now and then he will improve, but no one can say how much — it might be one of those amazing recoveries (especially since he is young), or he may have a permanent disability.

It won’t be too long before they get him out of there and into long-term rehab, which may possibly be in the Richmond area, because VCU reportedly has the best facilities. Or it could be even farther away.

This is going to be a long, slow process, and will be hard on everyone involved, especially his closest kin. I won’t post any more reports here until there are significant changes.

16 thoughts on “Family Medical Report

  1. Sympathy and goodwill to all the family concerned. The long wait and the uncertainty are a strain on personal resources. Hang in there, and be stout of heart. It can be a long journey.

    • You’re right: it is a strain. The financial part is taken care of by insurance but the sense of loss is overwhelming sometimes.

      I haven’t been into town to the hospital to see him; the B has done all of that for me. It would be a long and wearing ride for nothing but sorrow at seeing his condition. He doesn’t know anyone is there, at least he doesn’t in the sense that we would understand it. Who knows what goes on underneath?

      It gives you a sense of how low our hopes have sunk that the mention by the nurse of “six months” till he is conscious lifts my spirits.

      Thanks to everyone for their care and concern and prayers.

  2. If it’s any comfort, I can tell you the tale of my own experience just four years ago. The reason for telling is that (a) it’s surprising how you can recover from stuff that seems pretty dire at the time, and (b) it’s frankly appalling how members of the medical profession can blithely write you off.

    I had a stroke caused by a medical specialist overdosing me on a medication over a period of two years. For a short time, I completely lost the ability to speak and was paralyzed down one side. Over the next few months, I couldn’t write, I couldn’t even wipe my behind for the first week. I limped, had difficulty thinking, had crippling headaches, slurred, got confused. It took a week to learn to point a finger so I could type. The first time I tried signing my name it turned into a crazed skitter across the page. The cardio-vascular specialist warned me the surgery I probably needed was deathly risky; the doctor in charge of my case told me I should start learning to write with my left hand; the physiotherapist said I should use the same to wipe. Then the cardio-vascular specialist said it appeared the cause wasn’t what was initially indicated and what actually went wrong had spontaneously healed; the doctor said nothing when I told him I was writing with my right hand again; I never even bothered informing the physio. Today, I can sign my name vaguely the same as before. I can write a shopping list. I can type four finger left and one finger right as fast as I cackhandedly did before. I don’t slur. I only limp when I’m exhausted. I can think straight. When I literally get a headache from trying to sort out some coding problem, I think about the big white patches on the DICOM scan of my brain and figure the headache is my grey matter rewiring around the dead spots. Things I was told I’d never do again, I can. Those I can’t don’t matter.

    Lesson: Don’t pay too much heed to the specialists and doctors – they’re as scared and flawed and in the dark as we are. Never give up hope. Miracles are real and really happen. Sometimes when things look really bad, the human body surprises you. Have faith.

    • I don’t know what the “specialists” say as I don’t go to the hospital and the Baron is not an *immediate* family member. I’d like to talk to his dad to find out more…

      The damage to his brain is what I’d like to hear more about. All those bones will heal eventually.

      Thanks for your story. Inspiring.

  3. If you have time, Dymphna, I think we should all v. much like the odd note over the weeks to tell us how he is doing. Sorry if this is presumptuous, but just a sentence from time to time would be much appreciated. Meanwhile we are thinking of you all.

  4. B,D, likelihood is strong, regardless of EEGs, specialists, etc. he may suffer for a time of “locked in body” syndrome, perhaps months. Can hear, maybe sense, but not or nearly not react, in any visible manner. Music, talking familiar or loved-close one’s sound, touch, stimulation, encouragement and support, also when conscious, will help ultimately. Likelihood of this, is considerable. It is an occurrence with comatose conditions. On occasion, awakening has occurred years later, a difficult situation, of course.


    • I’ll do some research on that syndrome. Thank you.

      Meanwhile, he’ll be in such severe pain when he awakens, that I dread consciousness for him. At the same time, I realize he will soon need to start some kind of physical rehab in order to regain muscle tone. He’s not ready to be moved yet but when he is, the places they are recommending have a good reputation.

      I’ve been reading up on brain trauma. Here’s where I started:

      • Try here for another beginning:

        There have been many stories from the victims who have awakened, weeks, months, and recently a person years later. All indications are that it is correct to assume that there may be function that may be function not electronically discernible, but consciousness, and hearing goes on. It constitutes a very difficult borderline area of medical science, poised on the very edge, which some just want to coldly move on and cut dollar losses, and some realize there is a place of the brains like the golf ball on the lip of the hole, will it go in, when, or will we be able to reach and pick it up, how soon?

        A wild card possible, given increasing research on diverse improvement of parts of brain function, potentially at a later date, most likely, a course of prospective treatment of the new emerging procedure, of magnetic deep brain stimulation, medically professionally administered, if all else looks dim, might be a modality of possible treatment. I think only a few researchers in neuro are working with this potential game changer, for a number of conditions, in America. At least one company has a commercial product available for sale to apply this procedure. Caution, as in all medicine, and far worse in the hands of amateurs, if done wrong it can have negative effects, or no affects, as wave form, power, application site, frequency, all have been studied, for the best known current best results.

        So there are some other areas for possible hope, beyond prayer…..
        Here is a beginning list, not yet read by me but look good, from searching (anonymously searches google, which is still good for science searches, I think…) with phrase-“long term comatose, recovered, but locked in conscious”
        “The locked-in syndrome”: Can it be unlocked? – ScienceDirect… Proxy Highlight
        Disorders of Consciousness: Coma, Vegetative and … – Springer Proxy Highlight
        How One Brain Came Back From Unconsciousness – The Cut Proxy Highlight
        Recovery of consciousness after brain injury: a mesocircuit hypothesis Proxy Highlight
        Neurologists are finding new ways to wake patients up from comas … Proxy Highlight
        Trapped ‘coma’ man: How was he misdiagnosed? – Proxy Highlight
        “The locked-in syndrome”: Can it be unlocked? – ScienceDirect… Proxy Highlight
        Clinicians need to be familiar with the condition because there is a high chance of erroneous diagnosis, such as coma or vegetative state, after a prolonged unconscious state. It is often the relatives or carers who recognize the conscious state first and report that the patient can communicate through his eyes. Because of …
        Disorders of Consciousness: Coma, Vegetative and … – Springer Proxy Highlight
        In most cases, the patient recovers within a few weeks, but in some cases, they may remain in a state of no awareness or minimal consciousness for several months or even years or decades. Another exceptional condition the locked-in syndrome. (LIS), where the patient awake from the coma fully conscious but is unable to.
        How One Brain Came Back From Unconsciousness – The Cut Proxy Highlight
        Jun 10, 2015 … To gauge Dylan’s chances of regaining consciousness and
        achieving a meaningful recovery, doctors would rely on standard time lines, and their prognosis would inform …. He’d passed from a coma into a vegetative state, a condition of wakeful unconsciousness — eyes wide open but mind still shut down .

        Recovery of consciousness after brain injury: a mesocircuit hypothesis Proxy Highlight

        Dec 1, 2009 … Recovery of conscious awareness and cognitive function following
        severe brain injuries can occur over surprisingly long time intervals of months, years … minimally conscious state (at least some behavioral evidence of awareness), and up to and including patients in locked-in state (full consciousness with …
        Trapped ‘coma’ man: How was he misdiagnosed? – Proxy Highlight
        Nov 24, 2009 … London, England (CNN) — A Belgian car crash victim who was
        misdiagnosed as being in a vegetative state for 23 years was conscious the whole time, it has emerged. For years he listened to the conversations going on around him but he was unable to communicate with his doctors or family. Rom Houben …
        Neurologists are finding new ways to wake patients up from comas … Proxy Highlight
        Mar 17, 2014 … Horrifyingly, the report implied the existence of patients in a state worse than the usual locked-in syndrome: conscious but without any means of … Even in patients with a long history of a vegetative state or minimal consciousness, the brain remains plastic, and spontaneous recovery can never be excluded.
        Disorders of consciousness – NHS.UK Proxy Highlight
        Coma; Vegetative state; Minimally conscious state; Why they happen; Making a
        diagnosis; Treatment and care; Recovery; Withdrawing nutritional support … A vegetative state is when a person is awake but is showing no signs of awareness . … If a person is in a vegetative state for a long time, it may be considered to be:.
        Disorders of Consciousness: Brain Death, Coma, and the Vegetative … Proxy Highlight
        Feb 4, 2015 … She had good reason to believe that Matt was not simply in the locked-in state, which is the state of being conscious but unable to move. … Dr. Roberts explained to Matt’s parents that the term “PVS” does not stand for “permanent vegetative state” and that Matt’s long-term prognosis was still uncertain.
        35 tips for recovery after recent Locked In Syndrome (LIS) diagnosis … Proxy Highlight

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