Tasting Food

Aside from her usual physical, occupational, and speech therapy classes today, Taylor got to eat real food. Despite that it was all puréed because she still has to practice chewing, she still enjoyed the experience. The speech therapist, who was helping Taylor with the “food” therapy, asked her what kind of soda pop she wanted. Taylor chose Dr. Pepper. You could tell from the look on her face that she really enjoyed that first sip of Dr. Pepper! Then she had small spoonfuls of mashed potatoes and gravy and puréed chicken and gravy. She still has to work on building the muscles in her mouth and controlling her tongue from not using them for over a month, but the speech therapist thought that Taylor did just fine. At night, prior to retiring for the night, Taylor had to pick her food (breakfast, lunch, and dinner) from the hospital menu for the next 8 days. I got tired reading her all the options from the menu for all of those days, but when I asked her if she wanted to stop picking, so said, “no!” She wanted to keep going and choose for every single day! I think she as is excited as we are that she is eating again.

6 Days

I (Kit) have been away from Taylor for 6 days. The progress that Taylor has made in just 6 days is amazing. The biggest change for me is her wakefulness and her ability to speak words now that her trach has been capped.  The whole time I was with her today (afternoon and evening), she was awake and aware. Her voice is still very soft and her words airy and slurred, but she’s getting there! She asked about her brother and when he was arriving (he’ll be visiting next week over his Spring break), and she wanted me to read from this website. She smiled every time I read a comment from someone she knew. She also got to order soft foods from the hospital menu for the very first time because she has advanced enough to start on solid foods. Tomorrow, she has about 3 hours of therapy. She finally fell asleep at around 9pm.

Craig Hospital Mailing Address

Many of you have asked how to send things to us at Craig Hospital. I meant to add the address to the last post but forgot, so here it is.  Please be sure to add Taylor’s name to anything you send.

Patient: Taylor Shaw
c/o Craig Hospital
3425 S. Clarkson Street
Englewood, CO, 80113

Excitement

Taylor and I had an adventure on the air ambulance today. The air ambulance was staffed with 2 pilots and 2 medical personnel.  (See picture below for Taylor being loaded onto the plane.) We flew for 2 hours and then stopped in Toledo, OH for fuel. Another 3 hours got us to Colorado. Taylor did mostly very well on the flight, but was uncomfortable for part of it and did some squirming. (But wouldn’t you if you had to lay on a stretcher in a plane for 5 hours?) She slept some on the plane, which was good because she did not sleep much the previous night.

Taylor is now at Craig Hospital. So far, John and I are very impressed with what we’ve seen of the facilities and staff. Their philosophy for rehabilitation seems to match with ours. For example, we have always felt that Taylor was ready to be weaned off of the tracheostomy, but the staff at MGH never wanted to take the first step, which was to deflate the cuff. When the cuff of the trach is up, all of Taylor’s secretions from her mouth and her nose go straight into the trach. With the cuff down, Taylor has to manage her own secretions from her mouth and nose by swallowing and allowing them to go to her stomach. If she doesn’t do this correctly, the secretions can go into her lungs and possibly cause an infection. The staff at MGH never wanted to take this risk always telling us that she wasn’t ready. We’ll, not even more than 2 hours of arriving at Craig, the respiratory therapist came to see Taylor and deflated the cuff. And guess what? Taylor had a little trouble in the beginning with the new feel of her trach, but she was able to manage just fine! Also, she has been sleeping…a lot! I guess it was a very exciting and tiring day.

Waiting and waiting

Well, it turns out the reason there was a delay in the insurance authorization is because insurance denied covering the cost of the travel. Some good news is that Craig Hospital has agreed to pay for half of the travel cost. We agreed to pay the other half and we are confirmed to leave Boston for CO this morning.

Taylor did not sleep at all last night; she has been mildly storming. We have a big day today. Please wish us a safe and non-complicated journey.

Awareness

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!

Many Visitors

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.

Answering Questions

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?)

Another Lazy Day

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!