This is an update on Taylor’s current condition to let everyone know how she is doing in a technical sense.

General
In all things Taylor continues to improve. Her determination, perseverance, and good attitude continue to inspire and amaze me.

Mental Skills
Taylor is back to her old self mentally. So much so that it feels inappropriate for me to comment on it. She can do this for herself at some future time.

Motor Skills
What is perplexing about Taylor is that her memory of all kinds of facts and ideas are intact but her memory of motor skills seems completely lost. In each task she tackles she has to break down the task and examine exactly how to do it given her current abilities. Because most of our everyday simple tasks are actually highly coordinated movements involving momentum and precise timing she has to come up with simpler ways to get them done. For instance when opening a heavy self closing door she grabs the handle with her right hand and walks backward to open the door wide, then she puts her left hand behind the door, then she puts her right hand behind the door, then she moves her body around to the back side of the door, finally she backs into the doorway. Each of these steps she can do one motion at a time which minimizes the need for coordinated movement. Over time she will develop more sophisticated methods of opening the door as in each of these carefully thought out tasks she constantly improves and improvises.

As I pick her up each day from therapy she methodically goes about each task in her routine. Some she is still learning, like zipping and unzipping her backpack, others she is refining like opening a car door and sitting in the car. Each is a process and a therapy in itself. As she continues to improve it is easy to imagine her completing her goal of returning to school in fall 2015.

Physically her left arm is not as coordinated as her right and she relies on her right arm a great deal. To a lesser degree her left leg is not as agile as her right. When walking it is challenging for her to relax her left arm and let it swing.

Vision
Taylor’s vision is improving, but is still her greatest challenge to a full recovery. She got some new glasses with prisms designed to open up her tunnel vision but they did not help as much as we had hoped. They did make objects appear sharper which is a big help in correcting the mechanical half of the challenge. The other half of the challenge is her ability to mentally recognize what she sees. The other day I sat in on an occupational therapy session where Taylor was locating letters randomly placed on a wall. Each letter was about 4 inches tall and she was unable to see all the features of any one letter. Like a detective she explained how she identified each feature and how that allowed her to deduce which letter she was looking at. For instance the presence of a curve rules out letters with only straight lines like E and A, the presence of straight lines and curves could mean letters like D and B. Using these methods, along with the knowledge of the location of other letters she found and the process of elimination, she was able to find all the letters but took longer than a normally sighted person would. Like with motor skills Taylor has to break down the task of visually identifying an object into more thought out rudimentary steps. Perhaps the two are linked? Like her motor skills her vision improves everyday and she is building her methods of discerning the visual information she needs to get her tasks done.

Attitude and Motivation
Taylor continues to be praised by her therapists for being a hard worker, highly motivated, serious and thoughtful as she goes about her therapy sessions. She has a great attitude and is usually joking about everything when we are together.

Taylor’s vision is developing but in perplexing ways. She describes her vision as “looking through a window in the rain” in that the image is constantly moving and distorting as rain drops keep falling on the glass. She also describes her images as cracked so that if we ask her to look at a flagpole or line on the wall, she describes it as cracked or broken up in a few places.

Lines and Letters

When looking at a series of letters, she only sees part of them. For instance, when I show her a letter “P” she says she can see a curve but not a straight line. I asked her, “How can you see the curve but not the line?” She answered, “If I could see the whole thing, you wouldn’t be asking me these questions.” When I show her a letter “A” or “V” she knows it is one of these letters because she sees the triangle in each but cannot tell them apart, despite the fact that the triangle outline of each is inverted. When she sees a letter “E” she sees horizontal lines but no vertical line. When looking at a letter “H,” she sees vertical lines but no horizontal line. When looking at a computer screen in a dark room, when a line is shown, she can identify if it is strait or curved. If it is strait, she can identify if it is horizontal or vertical. If she is shown two lines she will report seeing three or four.

Colors

Taylor has always been able to detect colors. Using 8″x11″ pieces of colored paper, she can identify the color at up to 100 yards away and probably farther (we ran out of space). However, when walking back to where Taylor was from 100 yards away, she couldn’t identify me as a walking person until I was 20 feet away.

Surprises

Every now and then Taylor will surprise us by recognizing something that clearly takes better vision skills than she normally exhibits. For instance, she recognized that I needed a hair cut. This was true but not “that” true, so she must have caught a glimpse of something.  This happens from time to time out of the blue. When it does, it is a pleasant surprise.

This website is about positive news, and now that Taylor has reached this level of recovery, I can now talk about some of the negative news we initially got.

In the beginning, the senior neurologist gave us the news. It was blunt and simple: ‘Persistent vegetative state for the rest of her life.’ This news really stunk, so we earnestly enrolled Taylor in a research study, really just to get access to another professional to get a second opinion. The neurologist heading up the study talked candidly with us but in the end, said the same thing.

The research neurologist did give us a glimmer of hope by noting that before the cooling protocol, this prognosis was very accurate, but after this protocol, which Taylor received, the prognosis was only 95% accurate. As I said…a tiny glimmer. Exploring and coming up with ways to explain this 5% was the focus of the study.

Then I managed to get a young night shift resident to give it a go. At 3 am he looked at the MRI with me and very carefully took the time to explain exactly why anyone looking at that MRI would say the same thing. Basically, because the brain needs a feedback loop to process time-based information, and the feedback mechanism is heavily damaged, she will never be able to process a sentence or a succession of eye movements or anything at all. He then proceeded to talk about the other damage.

Then a friend of a friend (thanks JB) took a look at it and said it looks “not very optimistic.”

Then I cornered another night shift resident who also gave the same assessment under no uncertain terms. You see, night shift residents are young and haven’t learned the fine art of sugar coating. They tell you the text book case of things and don’t hold back. I explained this idea to a senior neurologist, and he said they do this only because they are so green that they haven’t been totally wrong yet.

The clincher was when Taylor’s eventual lead neurologist first looked at the MRI. At that time, he and I hadn’t met. I was walking in and out of Taylor’s room and when I did, this doctor was glancing over at me from behind a computer screen. It wasn’t a good glance. It was a face of incredible emotion. It creeped me out and after two or three of these looks, I shot him a WTF face. When I did, he realized what he must’ve looked like and immediately changed to a pleasant smile. When he finished with the computer, he asked to speak with me and said he had just reviewed Taylor’s records and wanted to talk about how to proceed. He was a seasoned pro and as such, carefully told me to not expect much and discussed what kind of care we could give her short and long term. He has kids about Taylor’s age and the sorrow in his raw, unfiltered expression still haunts. That look!

The greatest news of all is that we don’t care about any these predictions because Taylor didn’t just beat the original prognosis, she kicked its butt! Apparently, she is in the 5% that defy the pre-cooling methods of prediction. Of course, to anyone who knows Taylor, that’s not a big surprise.

“Taylor Code” is a way for her to communicate with us using simple gestures. “Yes” is stick out your tongue. “No” is shake head side to side. “I don’t know” is close your eyes.

Her improvement in answering questions using this code is amazing. She is able to explain her comfort (and discomfort) to us using a few questions. Example: Are you comfortable? No. Are your legs bothering you? No. Is your back bothering you? Yes. Do you want to be rolled over? No. Do you want to be pulled up? Yes. Problem solved!

I also asked her if she “wanted to tell or ask me something?” Yes. ‘Now what do I do?’ I thought. Getting to the point of what she wants to is a bit trickier. Here is how the conversation went:

Is it about an object or a person? Oops, that’s not yes or no question. Is it about an object? Yes. Is the object stationary, like a house? No. Is the object movable? Yes. Does the object belong to you? Yes. Is it your old car? No. Is it your… wow there are a lot of possibilities. Out of the blue I say “Is it your computer?” Yes. Eureka! What about your computer? Oops, she can’t answer that. Do you want me to get your computer? Yes. I now have the computer, do you want me to turn it on? No. Huh? Are you sure you don’t want me to turn it on? Yes. After thinking about it for a while… did you just want to know the computer is here and safe? Yes.

At first I thought this was an odd first question to ask, but considering it is probably her most valuable and useful and personal possession, it is not a bad first question. It also made me think…What would be my first question assuming that, like her, you already know that you and everyone in your family is safe?

If anyone has any experience, tips, or ideas on how to carry on conversations this way, please leave a comment.

Taylor is storming on a regular basis. Basically most of the time she is awake, she is storming.

What it looks like is she moves her arms up from her side towards her head, sometimes to the side, sometimes straight up. Her legs kick to the side and up and down and her head turns from side to side. These aren’t violent movements. They are sometimes smooth and slow and sometimes jerky.

What it feels like is rigid for periods then loose. She is flexing her muscles so much that she breaks out into a sweat, which is problematic because it causes her heart monitoring electrodes (pads stuck to her chest) to come off. Sometimes her actions are so strong that you are amazed at how much force she is exerting.

As I sit next to her observing this for hours, I can’t help to think that I have seen Taylor do this before. Anyone with a new born baby knows what I’m talking about since this is the exact behavior they display. The literature says that brain injury storming lasts for an average of 74 days. This is also similar to how long newborns have these same random movements. After the first three months newborns start to move in  more purposeful way.

Of course, since Taylor is an adult, it is not exactly the same as newborn movements. For one thing, Taylor is not as fat as a sumo wrestler like she was when she was one month old. This means her limbs have a much greater range of motion. Judging by her grimaces, she also does not seem to be enjoying it as much this time around, perhaps because she is breathing through an uncomfortable tube stuck into her neck. There are also many dangers associated with storming for hours that are not thought to affect newborns. These dangers stem from the effects of prolonged rigorous exercise and include hypertension, high heart rate, and dehydration, to name a few. In Taylor’s case, it is causing her to lose weight and need much more water to stay hydrated. It is like she is running a marathon every day.

Also unlike a newborn, the treatment for this behavior is different. While a newborn gets no treatment, Taylor occasionally gets Morphine to calm her down. As a parent, it is a difficult thing to OK the use of such drugs on a regular basis, but it can be equally difficult to watch her flexing herself into a sweat for hours on end.

Since newborns and severe brain injury patients both exhibit what appears to be the same behavior, I wonder if this is the way the body makes connections from the nervous system to the brain. Perhaps these connections are damaged in Taylor’s case and she has to go through the same process a newborn goes through to familiarize her body to her brain?

Standing around Taylor’s room all night checking out the equipment caused some awareness of the big picture of consciousness recovery. Here are the basics of consciousness recovery:

Intubation – is inserting a breathing tube in the mouth that has two functions. First, it allows easy hookup to a breathing machine which may be needed if the unconscious patient can’t breath on their own. Second, it has a balloon mid tube that is inflated to help block the airway to prevent fluid from seeping into the lungs. The balloon also keeps air forced into the lungs from going up into the mouth and sinus.

Ventalator – This is a programmable breathing machine that helps patients breathe. It has two main modes. Fully regulated breathing mode pushes air into the lungs at a specified rate and duration. Assisted breathing mode detects the patient’s breathing and assists by adding air when the patient inhales.

Sedation – is needed for two reasons. First it prevents patients from having continued gag responses caused by the intubation. Secondly it prevents patient initiated breathing from fighting the ventalator. Fighting the ventalator occurs when the patient is not able to initiate their own breaths in an effective way, either by breathing too short and shallow or to big and long when the body needs steady full breaths.

Catch 22

Because the patient is unconscious they are intubated and placed on a ventelator, which causes the need for sedation, which renders the patient unconscious. How are they ever supposed to become conscious if they are always sedated?

The clinical answer to this question, currently in practice with Taylor, is they are taken off sedation each day to see if they wake up. However this method makes a few assumptions that may not or may not be true on a case by case basis.

It assumes the patient is going to wake up quickly after the sedative is removed. Typically a patient is taken off sedation for less than an hour while a neurological test if performed. This means the patient is sedated 95+ percent of the time. If a patient is slow to wake, for instance if they take several hours to slowly come to consciousness, then this method won’t get to that point.

It also assumes the patient is not harmed by the sedative while their neurological system is healing. The assumption is that because the sedative does not show any neurological side effects in patients with normal brain function then it should have no effect on patients with healing brain functions.

Tracheostomy To the Rescue

The situation described above applies for patients who don’t wake up after the first one to two weeks. After that point a Tracheostomy comes to the rescue by taking the tube out of the mouth and into the windpipe through the front of the neck. Taylor is scheduled for one of these tomorrow (3/2/2014). This allows the patient to come off the sedative as it’s much more comfortable for the patient than intubation. The challenge is that by this time the patient’s neurological healing has mostly taken place.

Products That Would Help

Blood Oxygenater – To help this situation it would be great to have an alternative way to oxygenate blood. If a magic box cold be placed next to Taylor that would supplement her lungs ability to oxygenate her blood… that would be great.

Throat Clearer – to avoid pneumonia caused by fluids entering the windpipe it would be great to have a light weight soft device that would sit in the throat comfortably and clear any fluids before they enter the lungs.

Although these products may sound far fetched and I don’t have any idea how to make them, I am sure someday they will exist. Doctors and Nurses today are completely comfortable with days and even weeks long sedation for recovering patients, but someday we may look back and wonder how long term sedation to help recover consciousness ever made sense.

Taylor experienced Anoxic Brain Injury (ABI), which means her brain was injured by lack of blood flow to her brain. This kind of injury can happen as soon as four minutes after blood stops flowing.

According to the Emergency Medical Services (EMS) report, an ambulance team arrived 6 minutes after dispatch where Taylor was unconscious with no pulse. EMS technicians applied a combination of defibrillator shocks and CPR to revive her. CPR would have caused some blood flow. They were successful after about 15 minutes.

In Taylor’s case, MRI results showed ABI in patches throughout the brain. The effect of this damage on her consciousness is not known. What is known is that she is not showing any outward signs of consciousness at this time. It is not known if the damage will heal. However, it has been predicted by one neurologist as not likely.

Since there is no therapeutic treatment for this condition, avenues for recovery are giving the body time to heal itself and medical research. Medical research into brain cell regeneration (neurogenesis) is an active field with many current studies taking place.