Taylor had her first outpatient rehab sessions at Ranchos Los Amigos today. We met her speech, occupational and physical therapists, the neuropsychologists and neurologist for the first time. It looks like Taylor will have another awesome team working with her!
Today was mostly establishing Taylor’s “baseline” values. In speech, her cognitive function was assessed; in occupational therapy, the range of motion and the strength in her arms were assessed; and in physical therapy, her walking, flexibility and strength in her legs were assessed. All of this work tired her out, and Taylor took a 3 hour nap after we got home! Going forward, she will have sessions 2 days a week and lots of homework. The goal now is to get her back to independent living.
At night, when we were talking about the events of the day, Taylor explained that she experienced a “moment of clarity” in the speech therapist’s office. Taylor says that what she “sees” is no longer like looking through a rainy window but is just blurry. While in the speech therapist’s office, amongst all this blurriness, she realized there was a calendar there that clearly said “June,” but then it went away. It’s like her brain is trying to interpret the images her eyes are taking in, and in that instant, the correct interpretation was made. What an amazing moment of clarity!
We have been home more than 2 full days now and are slowly settling in. It’s nice to see Taylor continue to become her old self again now that she is in the home setting. When we were unpacking her clothes that had been sent back from her dorm room in Boston, she enjoyed going through them and remembering what she had as I described them to her. She also expressed interest in going to a mall to get some skinny jeans, which had all been discarded in clearing out her dorm room after her accident. When we were at Craig, she usually didn’t care which pajama pants or T-shirt was chosen for her to wear.
She also asked if she could “watch” TV, which is another thing she never expressed interest in at Craig. Before her accident, Taylor was a big reality show fan. Since she’s been home, she has been enjoying listening to the reality shows and jokes that she should be allowed to watch them because watching TV is good exercise for her eyes.
It makes me happy that Taylor is still interested in things that she enjoyed, like clothes and reality TV, before her accident. To me, these are signs that she continues to recover her old self.
Well, after 11 weeks at Craig Hospital, Taylor was discharged yesterday. It certainly was a bittersweet day. Taylor made many gains while she was there. When she first arrived, she had a tracheostomy for breathing, a PEG tube for feeding, and a PIC line for medications. The most she could do was stick out her tongue for “yes,” and close her eyes for “no.” Now, she is tube and line free and can speak and have conversations. She can also sit, mostly unassisted, is getting better at standing every day, and helps her caregivers when they have to move her around. She is also learning how to walk again. With her awesome physical therapist, Taylor walked out of Craig yesterday (see video below)!
Yes, it was sad to say goodbye to the wonderful and caring staff (many of whom went out of their way to see Taylor and wish her well) because they have helped us so much. At the same time, it is wonderful to be home and be in familiar surroundings and to start the next leg of this journey.
Back in Boston we got a big favor that has never been acknowledged. We were in the Cardiac Intensive Care Unit (ICU) and were about to be transferred to a general purpose floor for continued recovery. This was bad news to us because we had been telling the staff for the last two weeks that we need to be in the Neurology department because Taylor’s challenges at that time were all about her neurology. The excuse we kept hearing was that there was no room in Neurology. This was frustrating because when we asked questions we were told that “this is a neurology question” and that as members of the cardiac team they couldn’t help us. The idea of being transferred to a general purpose floor was worrying us.
Around this time Dr. Robert Langer, James Dahlman, and a few members of Taylor’s lab came to visit. “Bob” Langer is the Principal Investigator (PI) of Taylor’s lab and James is her lab supervisor. They asked if there was anything they could do to help and I mentioned the situation about getting to the neurology floor and that we were frustrated. They mentioned that they would try to see what they could do and left. About 20 minutes later, The nurse came in and told us we would be moving to the neurology floor. Later I got a call from James who asked me if we got transferred to the neurology floor.
Unlike all the super smart people at MIT, I am a bit slow on the uptake, it happened so soon after they left that I didn’t immediately make the connection. Though we will never know for sure, looking back now I am pretty sure Bob, who is a giant in academic research, intervened on Taylor’s behalf and contacted who he could to help Taylor get the care she needed. Time after time we have seen how the MIT community looks after their own. We are grateful to count them among the many angels, near and far, who have helped smooth the road to Taylor’s recovery. Thank you Bob and James.
To allow you to take a break from my father’s typos, I’m here to write a few posts here and there. In case you don’t know me, I’m Taylor’s younger brother, Nathan. I will be visiting my sister here at Craig until the 17th.
The defibrillator procedure now feels like the distant past. The only remnant of it is the temporarily limited left arm movement, and of course, the scar. It took a while to actually do the procedure, but now that it’s over, it’s great. We can leave the hospital to go on long walks or even drive around. Due to the generosity of my uncle Hung and aunt Erica who lent us their car, on Sunday we were able to drive to Downtown Denver and see the 16th street mall. We’ve also been walking around Englewood, the area surrounding Craig. Downtown Englewood is a very nice area with great places to eat. These past few days remind me of when Taylor and I used to hang out with our dad a lot and go to different restaurants and joke all the time.
Craig Hospital is a really wonderful place with great people, care, and support, but it’s time to leave. We are now a week away from discharge, and I think we’re all ready. Taylor has been here for a very long time and it shows by the way everyone knows her. Everybody here is sad to see her leave, but we are ready to come back to LA. This final week is the home stretch.
Taylor got to spend some time with her bud, Leilah, who she has known since third grade. Also, her brother Nathan and his girlfriend Arielle were here visiting so Taylor finally got to spend some time with people her own age. Here are some pictures:
Gnomes made by Taylor and Leilah in Therapeutic Recreation
Leilah, Nathan, Arielle and Taylor in the new family suite room
Taylor and Leilah sitting on the couch. This was the first time Taylor was not in a hospital bed or her wheelchair since first entering the hospital. She managed great but occasionally she would say “I’m falling” and would need to be put upright again.
Taylor got a new room at Craig. It is called a Family Suite and includes a section with a hospital bed that looks like a typical hospital room. Further into the room is another section that includes a kitchenette, a small dining table and a pull out sleeper couch. This room helps her family learn the ins and outs of caring for her once she goes home. You can see it in the pictures above.
Out for a Stroll
Taylor is now approved for all kinds of activities outside the hospital now that her defibrillator is implanted. We found a lovely path where we walked along a flowing creek, watched a bit of a high school baseball game, and then put Taylor on the grass for a few moments.
Taylor loves to pull pranks and uses them to keep things fun. She wanted me to include one of them here.
Knowing that Nathan and Arielle were coming to see her, Taylor got an idea to use a novelty toy she has to make some fun. She has a toy brain made out of soft foam. When you squeeze the brain it makes a flatulent sound. Her idea was to put the toy under her mid section and when Nathan and Arielle show up she could wiggle a bit and make the toy sound off. She did this to great effect for about two or three minutes. It went like this “PTHFEET! I’m sorry… PHFETHEFET! Sorry, I am taking medicine that makes me have gas… PFTTTTPH, oh, I’m so sorry.” Eventually Taylor’s mom pulled out the toy and let Arielle and Nathan know they were punked. Taylor’s fun attitude keeps everyone laughing.
Today Taylor got her feeding tube removed which makes her tube free for the first time since the day this journey started. Yippee! To round out the day Taylor and I finished some basic training for car transportation and wheelchair handling. These events are preparation for when Taylor is discharged from the hospital and moves back home to complete her rehabilitation.
Taylor also has a lots of extra care givers to help her around for the next few days. This includes her brother, his friend Arielle, Taylor’s friend Leilah, Taylor’s Mom, and me. Taylor is enjoying the company and the build up to being discharged. Just a few more weeks to go.
The procedure that Taylor got for the implant is called a sub-pectoralis procedure. Normally, a defibrillator can be implanted subcutaneously, below the collar bone, but because of Taylor’s thin and small frame, the cardiologist recommended the sub-pectoralis procedure to prevent potential wear and tear of the overlying skin from a subcutaneous implant. Also, because of Taylor’s youth, he wanted to implant a device with a longer battery life (10-12 years vs. 5-6 years with some) to minimize the number of battery changes she would have to undergo throughout her life. A longer batter life meant having a larger device, which would have been better held in place under a muscle v. skin. With the sub-pectoralis implant, the surgeon makes an incision on the side of the chest near the armpit. A layer of the pectoral muscle is then lifted to make a pocket for the defibrillator to sit. The leads are threaded to the heart and the defibrillator is anchored to the muscle with sutures. As one can imagine, a sub-pectoralis implant makes for a more painful recovery compared to a sub-cutaneous implant, which lays just under the layer of the skin.
Friday, the day after the surgery was a rough day for Taylor. She was in pain and very uncomfortable. She ate only a few bites of food and felt nauseated for most of the day. The doctors and nurses did their best to make sure Taylor was comfortable with available medications. We even had to turn away some visitors that day because Taylor was so miserable. However, yesterday (Saturday) was a much better day. The pain was still there, but it was not as intense and tolerable. The cardiologist was able to remove the pressure dressing over the incision site; it looked good. The incision itself is about 2 inches in length. What is nice is that one cannot even tell there is even a small device under her muscle there. If one looks carefully, he/she may be able to detect a small, slight lump in the skin, compared to the other side, but other than that, it is not noticeable. Taylor was feeling so much better that we were able to get her into her wheelchair and take her outside to the nice gardens they have here at the University of Colorado Hospital. She also regained her appetite to make up for the last 2 days of hardly eating any food and ate heartily (pasta, salmon, fruit, corn, frozen yogurt, spinach salad). You can tell when Taylor is feeling better because her teasing and joking starts up again.