Taylor has been the most aware today than any other day since the incident. She spent a good part of the morning crying and being sad (as did I). When asked by the doctors who examined her today, she answered correctly with sticking out her tongue (yes) and closing her eyes (no) to the questions, “Are you an MIT student?” “Are you a Harvard student?” As you can imagine, this made her especially sad and really showed that she was aware.
Taylor also had visits by the occupational therapist, who worked on her stiff arms, and the physical therapists (PTs) , who put her legs off of the bed and supported her as she sat up. Taylor was initially not holding her head up as she sat, but one of the PTs asked her to raise her head up, and she did! The PT then told Taylor that she was putting her head back down and that she wanted Taylor to raise it up again. Again, Taylor had no problem raising her head. They did this together one more time, and at the end, Taylor was holding her head up for the rest of the sitting session before they lay her back down in bed.
As for the transfer to CO, unfortunately, we have been delayed again until Wednesday because of insurance paperwork. We are crossing our fingers that we only have to be here one more day!
Taylor had a very good day today. She slept for most of the morning and appeared comfortable. She was less emotional and continued to answer questions with her tongue and eyes, although not all of the time. (She was probably tired of me asking her to stick out her tongue for “yes.”) Her friends from MIT have returned from Spring Break (which was this week), and as they knew that Taylor would be traveling to Colorado soon, many came to visit today. There was a steady stream of visitors in the afternoon and evening and the activity did not seem to upset her.
I found out yesterday that there may be a little hiccup with the paperwork for her transfer to Craig Hospital, so we may be delayed until Monday afternoon or Tuesday morning. We won’t know until tomorrow, of course.
Today, in the morning, Taylor seemed especially emotional. She had on her sad/crying face. After I calmed her down a little, I started asking her “yes” and “no” questions. I told her that if her answer was “yes,” she should stick out her tongue. If her answer was “no,” she should close her eyes. I asked her if she knew where she was. She stuck out her tongue. I asked her she knew what happened to her. She closed her eyes. I started telling her and she started crying. This made me very emotional, and I started crying, too. I told her that she was getting better and that everything was going to be all right. From doing this, I was also able to determine whether she was in pain and whether she was comfortable. (She was not in pain and was comfortable most of the time.) I also played music for her from Pandora on her phone. Each time I asked if she wanted me to turn it off, she closed her eyes, “no.” (Sounds just like Taylor, right?)
It’s confirmed. Taylor will be leaving MGH on Monday at 8:30am for Denver on a mediplane. The doctors, nurses, nursing assistants, social workers, case workers, chaplains, and other staff at MGH have been great. It will be a big step for Taylor to leave MGH after being here for just over 5 weeks. (Wow, has it really been that long?)
Today, Taylor was visited by the occupational therapist, who worked on stretching out her arms, which she can keep very stiff from the injury. Taylor was also visited by two physical therapists who helped her sit on the side of the bed with her legs hanging over. She did not like this too much (I think it scared her), and she only tolerated it for a little while before they lay her down again. When they did, they put her down on her left side (usually she is on her back) and covered her with her fuzzy bathrobe from home. She settled down nicely and looked very comfortable. Other than this activity, Taylor slept for most of the day. Her sleeping is not deep; she will go in and out of sleep in 5 or 10 minute intervals with wakeful periods in between. I hope this does not mean that she won’t sleep tonight!
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!
Craig Hospital in Denver has been chosen (99% certainty) as Taylor’s rehabilitation facility. It was our number one choice because of the closer proximity to LA, younger age of patients, and overall reputation and quality. Yesterday, we met with Donna, a representative from Craig, who came all the way out to Boston to examine Taylor and her care team to make sure they were a good fit. Today, we learned that Taylor was accepted into the program and that a bed will be available on Monday. Insurance and transportation are the only issues pending, but neither Donna nor the case worker here at MGH anticipate any problems.
Taylor had a very lazy day today. Her heart rate was up slightly more than yesterday, but other than that, she had a storm-free day. She has also turned into a little wiggle worm and can be quite restless in bed. The doctors attribute this restlessness to her becoming more “awake.” This is another good sign that she is ready for a rehabilitation facility.
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.
Yesterday morning Taylor was again able to respond to my commands to open and close her eyes. Today she did it as well but not as energetically as she did yesterday. The plan is to work out a slow blink and then use one and two slow blinks to work out a yes and no response. Once we work this out the first question will be “do you want me to change the music I am playing for you?” I’m sure the answer will be “YES!”
In between these two performances Taylor has been doing some more of what is called ‘storming’ also called Paroxysmal Sympathetic Hyperactivity (PSH). This is where Taylor gets nervous and starts breathing quickly with a high heart rate. Typically hospitals handle this by administering sedatives. Instead of this we are trying to calm Taylor with a foot massage or a soothing voice. That didn’t work last night but so far is working out today and Taylor is getting better at handling herself.
Finally we are back on the neurology care floor a room right next to Taylor’s last room. The ICU folks were great but we are glad to be in more calm environs for sure.
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.
Taylor faced a new challenge today as she was severely dehydrated. She had to be sent to the Neurology ICU for what is, hopefully, a short stay before returning to her neurology recovery ward. Taylor has been in the hospital for about a month, and her body has remained quite healthy until now. So far, her dehydration has fully recovered, so hopefully this episode will pass soon.