Taylor continued to have another good day today. She is now following commands more consistently. “Close your eyes” and “stick out your tongue” are two commands that she used to follow about 50% of the time. Today, she followed them every single time someone (physician, nurse, occupational therapist) asked her. She also followed three new ones: “look up” and “move your tongue to the left” (after the command to stick out her tongue) and “move your tongue to the right.” This is all good progress!

Today, Taylor received a beautiful paper crane mobile from old friends in Birmingham. Each crane has a saying on it, such as, “Taylor is perfect,” or “We love Taylor.” It is also very colorful and gives Taylor something nice to look at while she’s lying in bed ( see picture).

Taylor had a good day today. She rested a lot and got to sit in the lounge chair. She is still storming, but the episodes are more in control.

Tomorrow, a representative from Craig Hospital will be evaluating Taylor to see if she is ready/right for their program. We will also be evaluating them to see if it is the right program for Taylor.

Since being transferred to the ICU yesterday, Taylor has stabilized her blood pressure, heart and respiratory rates. She is being well hydrated, and the doctors want to keep her one more night in the ICU for observation before transferring her back to the neurology floor. They still do not know what triggered her excessive storming, which led to the dehydration. All of her scans and cultures have come back negative thus far. This is one hiccup, but the journey forward continues.

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.

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.

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.

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.

Today, Taylor advanced one more step with her breathing when her oxygen support was discontinued. She is now breathing by herself on room air. Since she is breathing through her trach and not through her nose and mouth, her air still has to be humidified, which is accomplished through a “trach mask.”

She has also been moved out of ICU and onto a regular hospital floor specifically for neurology cases. She continues to make baby steps forward.

We learned today that Taylor’s awake/heavy breathing/rapid heart rate alternating with resting cycles are called Cheyne-Stokes.  Today, Taylor continued with these cycles and seemed to be more awake than sleeping.  With her tracheostomy, she has also transitioned from breathing with assistance from the respiratory machine to breathing on her own.  She still needs oxygen support; if she continues to get better, this will also be discontinued.  These changes are small, but we’ll take them!