Lots of Visitors and A Big Step

Taylor started the day with her physical therapists. They placed her in a seated position with her feet off the bed and her back up straight. She responded to verbal commands to turn her head left or right which greatly surprised the therapists. She then was visited by the two members of the respiratory team accompanied by two speech pathologists. They worked on making her tracheotomy more comfortable for her. The speech therapists asked Taylor to open her mouth, stick out her tongue and then to close her mouth and she obeyed each command which again surprised the therapists. While the four of them were in the room the attending physician and his team of residents came in on rounds. At that point there were about 10 professionals in the room plus Taylor and me. After they all left Taylor’s occupational therapists came in and tried to get Taylor to move her arms around but by this time Taylor was done performing. Later that day Taylor was seen by one of her doctors to examine her surprising behavior reported by the different therapists.

By responding to commands Taylor has taken a big step since this behavior is the first time she did something beyond her original prognosis. This greatly changes the treatment program we will put Taylor in and we are excited by her continued progress.

Sleepy Day

Yesterday, Taylor slept for most of the day. The times she was awake, she did not storm for long or the episodes were milder. She slept for most of the night. Each day with her is different.

It is proving quite challenging to find a good rehabilitation hospital that will take her at this stage of her recovery. In fact, we will probably not end up in LA (or California for that matter) because we feel that none of the ones we have researched there will meet her needs. We are hoping to know by the end of the week where she (and we, her parents) will go next.


Compared to the last 2 days, Taylor had a peaceful day with not much storming and more sleeping.  Then, an unusual thing happened.  When Taylor was awake, with her eyes opened, but not storming, I decided to read her some entries from a journal that we have been asking visitors to sign when they visit Taylor in the hospital.  After I was about halfway through the first reading, Taylor started crying.  This crying was different than the tears we have seen previously when she appeared uncomfortable.  This time, her face got red, her mouth was open in a frown, and the tears poured out, as if she was truly very sad.  I immediately stopped reading, held her hand, and comforted her.  After she had calmed down, I started reading again, and again she started crying.  I stopped reading altogether, and by this time, John had come into the room, and we both comforted her.  We do not know for sure why she was crying.  Was she sad because she knew something was wrong? Was she crying simply because she was confused?  It is hard to know for sure, but we hope that it was because some consciousness had returned to her.

This Seems Quite Familiar

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?

Pi Day

Today is March 14 or 3/14, also known as Pi Day at MIT and the day that applicants receive word whether or not they were accepted to MIT.  Two years ago today, Taylor received her acceptance notice from MIT.  Today, Taylor is waiting to embark in another sort of program, a rehabilitation program to heal her brain.  Each day, the love and prayers from family and friends surround her by their hospital visits, the cards they send, the thoughts they post, the support for her parents.  Each day, Taylor gets a little bit closer to her new healed self.

So Much Love

Taylor has so much love. Earlier today, three of the nurses came in and braided her hair in two pony tails on each side of her head. As they did, they talked about braiding and when they last did it with their own hair. The nurses are incredibly compassionate to all their patients but clearly they were doting on Taylor. She continues to receive cards in the mail and notes of support on this site that we read to her. Her dorm mates came by again today and spent time with her hanging out and letting her know how much she is missed. They put her glasses on her and she looked nerd cute. In addition, local friends of her parents came by to say, “hi.” All this activity helps Taylor by filling her room with faces and sounds that are familiar and are very much appreciated. During all of these events, Taylor opened her eyes and took in the events calmly and seemed fascinated by what was happening.

We are searching for a Rehabilitation facility to take on the next stage of
Taylor’s healing. We are looking at programs specifically designed around Taylor’s stage of recovery (Disorders of Consciousness) and are searching nationwide to find the best care possible.

Day by Day

Yesterday, the surgeon who put in Taylor’s initial tracheostomy tube came to replace the tube with a smaller one. This is in an effort to eventually wean her off of the tube. They first have to give her a trial run by deflating the cuff around the tube to see if she can protect her own airway. (With the cuff “on,” all fluids and secretions go through the tube v. down to her stomach.) Hopefully, they will let her have this trial run soon.

Taylor also has started “storming” again. This process may last several weeks and is different for every patient. The hospital staff are doing what they can to keep her comfortable.

Taylor is also sitting in a chair for several hours each day.

Planning for LA, Baby Steps

Each day Taylor makes baby steps towards her recovery. The changes are subtle but consistent. Lately she seems able to move her head left and right to see more of the action in the room. These movements take several minutes to observe as they are very slow.

Kit and I are preparing for the move to Los Angeles. We are researching and contacting different Neurological Rehabilitation Centers to find the best one for Taylor.

Calming of the Storm

Yesterday and today, Taylor has been doing a lot more sleeping. Her waking, rapid heart rate/breathing (Cheyne-Stokes), muscle stiffening episodes (also called “storming” we have learned) are less frequent and less severe. We have learned that storming is part of the recovery process in many (but not all) brain injury patients, as the nervous system compensates for the injury and finds its new equilibrium. It is really nice to see her sleeping peacefully compared to the earlier days when she was struggling to tolerate the tubes through her nose and mouth.

Sitting, Moving Slowly

Slowly and steadily, Taylor is getting better each day. Today, she had a lower and more controlled heart rate, and she is becoming more expressive. You can see if she likes a type of music being played and possibly the topics of conversation by the expression on her face. She gets a frown or sometimes a slight smile.

She was propped up in a chair for a few hours today which was really exciting to see her out of bed. Here is a pic:

Sitting in Chair