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.

Today Taylor got a shower and afterwards a care giver carefully combed her hair and teased out a tangle. Do you want me to braid your hair? No. Do you want a pony tail? No. So we just left it loose.Taylor was curled on her side and looked more comfortable than she ever had.

Then came time to select the music. Incubus? No. Estella? No. The Lumineers? No. The Romones? Yes! After “Blitzkrieg Bop” started playing Taylor started smiling. Not a big obvious smile. Kind of a sneaky sly smile. Happy that she recognized some of her music. This was the third time she has been spotted smiling.

For Taylor’s first day of rehab she was pushed and pulled all over the hospital. First she went for lab tests and an x-ray, then to speech pathology for swallowing training, then to another speech pathologist to attempt use of the speaking trach. She then went to physical therapy where they tricked out her wheelchair. Afterwards she took a small break, then over to occupational therapy, then finally back to her room where they did and EKG. After that it was close to 5pm and she finally got some rest.

At each stop there were many questions asked and Taylor was answering them all like a champ. Between the two of us I was the tired one. Finally she is being put to bed and is resting up for another full day tomorrow.

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.

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.

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.