Today we had a “big” meeting to discuss Taylor’s rehab assessment. It included all the people on Taylor’s care team here at Craig Hospital. Nathan, Taylor’s brother, who is here to visit for the first time since Boston, was very impressed and noted that “there were nine professionals in the room who knew everything about Taylor.” Among the things discussed was that Taylor is hard to predict, as she keeps getting better so quickly. Another item from the meeting was her tentative discharge date of June 18th. This is not the date that her rehab will be complete, just the date that her help from Craig will be complete. After that, the plan is to be taken back to Los Angeles to participate in out-patient rehab.
After fun visits from an aunt, uncle, two cousins, and their families, Taylor settled down for some “bro time” where just she and Nathan chatted and caught up with each other’s news first-hand.
Taylor had a full day of classes and activity today. She started out with swallowing class at 8am. At 9am, she went to get her wheelchair re-adjusted to fit her better. From 11-11:30a, she had speech therapy. Then she had a break until 2pm when she went back to her room to listen to “The Hunger Games” and take a nap. At 2pm, she had more speech therapy when the speech therapist thought she was ready to start chewing small, soft pieces of food. She gave Taylor some canned peach cubes to chew, which for her first try went OK (she didn’t choke). Then Taylor went back to her room and took a nap. After the nap, we went outside to enjoy the weather, which, considering that it snowed yesterday, was pretty nice. The rest of the night we spent listening to “The Hunger Games” until John and Nathan arrived from LA. We all spent a good hour conversing with Taylor and catching up until it was time to go to bed. Taylor has another full day tomorrow.
There was blowing snow falling today in Colorado. As such, we could not go outside to enjoy the fresh air, which Taylor likes. On weekends, there is a lot of free time because no classes are scheduled. It is a good time to have visitors. Today, we had visits from Taylor’s Uncle Hung and Kit’s first cousin Pansy and her husband. It was a good day to be indoors and enjoy a lazy day. We have also started listening to “The Hunger Games” on audiobook. Taylor says she has not read the book before and has only seen parts of the movie. She is enjoying listening to the book immensely. The intensity and concentration with which she listens to the book is amazing. She smiles broadly at parts she finds funny. It is like she is a little kid experiencing something wondrous, and I can tell she is disappointed when it is time to take a break to go the cafeteria to eat, to take a shower, etc. This is a side of Taylor that I have not seen before.
Taylor’s speech is improving every day. However, it is still very slurred and sometimes I can’t understand what she’s saying. We’ve worked out a system where she will spell out a word that I don’t understand. She says a letter and I will repeat it until I have the letter right. Then we’ll go to the next letter in the word, and so on until I’ve figured out the word and she confirms with her airy, “yes.” As you can imagine, this can be a tedious process, but Taylor has shown surprising patience with me in trying to figure out what she’s saying. (Well, sometimes she does say, “Never mind.” LOL). Through this process, we have had a few conversations. This is what I’ve learned. She does not remember running with her roommate and having a cardiac arrest. She does not remember being at Massachusetts General Hospital at all. She does not remember taking the plane ride to come to Colorado with me. Her first current memory is her first day of rehabilitation at Craig. And, she cannot see. She can see whether it’s light or dark and she can see that there are colors, but she cannot see anything clearly. Of course, this is very scary for her and she and I have both cried about it. The good news is that her physician thinks this will improve. To what extent, we don’t know. However, Taylor has not lost her sense of humor. Today, when she was eating her pureed spaghetti (an idea that we both didn’t think sounded appetizing), she was surprised to learn that it didn’t taste as bad as she thought. Then she added, “I bet this would be less appetizing if I could see it.”
At the physical therapy session today, they put Taylor in a machine to help her stand. The machine looked like a desk with a seat and bumpers where her shins go. When Taylor was seated in this contraption, they cranked a lever, which started to lift and tilt her seat forward and caused her to put pressure on her feet. The PTs tilted the seat just a little at first to have Taylor get used to the pressure on her shins and feet. When they felt she could tolerate more, they lifted and tilted the seat more, which caused her to stand taller with more weight on her feet. When she got used to this position, they cranked up the seat again until Taylor was almost standing. Then they asked her to use the muscles in her legs to force her hips forward to stand completely on her legs. She did this about four times total, holding each stand for 1-2 seconds. It doesn’t sound like much, but this is the first time that Taylor has stood up since her accident, over 6 weeks ago.
We have turned on Taylor’s cell phone and she would like to receive text and/or voicemail messages from her friends. Please leave your messages for her, and we’ll read or play them for her.
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.
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.
What a day! Taylor had an ultrasound, six therapy sessions, her tracheostomy capped, her PICC line removed, and a video call with friends. What a difference a good night of sleep makes.
Capping her tracheostomy means putting a cap on the outside of so no air flows. This causes all the air to be through the mouth and nose like normal. It is a major step to getting the tracheostomy tube removed. As a result of capping she was able to start sounding out words in speech therapy. Her first words (hi, bye, yes, no, dad, and Clair) are faint but definitely there.
A Peripherally Inserted Central Catheter (PICC) line is a tube inserted into her arm that ends very close to the heart. It allows intravenous medicines to be given easily without damaging sensitive veins. She has had one of these lines in her arm for two weeks.
In the video call with friends she had a lot of fun and brought out her smile:
Later just before she went to bed I told her the story of how her brother Nathan asked his girlfriend to prom. Again she was all smiles.
I can’t describe to you how wonderful it is to see her smile. In the last week she has become completely aware of her predicament and has understandably been down about it, but she is bouncing back and enjoying life, including being her giddy/giggly happy self.
All of your positive thoughts and prayers are working!!!! Keep them coming.
By design, Taylor had a lazy Sunday in preparation for the busy week ahead. Her Uncle Hung, Aunt Erika, and their kiddos came in the morning to say, “Hi.” We found a place to visit and talk quietly. Then Taylor napped most of the day. Around 4 o’clock, she went for a ride outside in a wheelchair. At every fork in the road Taylor picked the route. When we got to the garden there was a breeze, and I asked her if she could feel it. Yes, she could. Then I said, rhetorically, “Doesn’t that feel nice?” “Yes,” she said.