Taylor is planning to go to University of Colorado Hospital tomorrow to have a device implanted in her chest to help her heart stay out of trouble. She will be recovering throughout the weekend then back at Craig on Monday to continue her therapy classes.

She continues to do well in her classes and we are also spending more time outside of therapy practicing basic life skills. This includes getting dressed, putting her feet on the floor to shift from her bed to her wheelchair (instead of using the lift,)  brushing her teeth, washing her face and all the other daily tasks of life.

Everything is therapy and the limiting factor is time. For instance, if we only have one hour to eat lunch, she can only practice eating for so long before we run out of time. Do we have enough time to let her practice getting dressed or washing her face? If not, then we do more of these things for her. If there is time, then we let her go to town on each task. It makes for a full day, each day. To give her some free time, we ease off all this practice in the evenings so she can chat with visitors or just spend some time listening to books. Right not Taylor is enjoying listening to “Watership Down.”

Taylor reminds me of her grandfather, my dad, who always had a great time being funny when he was in the hospital or severely ill.

When I told her about the video of her walking she asked me to play it for her. When I did she commented that instead of the soft piano music we used for the background music, we should have used the theme from Rocky.

She also pointed out that she does like to “box” with me. Her version of boxing is put on her mean face, to make fists, and flail her arms about saying “pow pow.” I said once that she looks very cute when she does this. She responded that she does NOT look cute, she looks “MENACING!”

All of this is great fun and the result of Taylor having a great attitude. Considering the hand she has to play it continues to amaze me how she manages to have so much fun. I can literally count on one hand the number of times she has really been down.

Taylor is having a lot of fun with her therapy sessions. She is kind of a favorite because she is so small and can be so easily moved (some patients are 300 pounds), and because she is so fun to be around. Here she is with an extra arm provided by her physical therapist:

Taylor is also enjoying time with her Aunts on her mother’s side. Today she was in the family apartment, located on the hospital campus, catching up on family lore with aunt Betty who is visiting from Minnesota, while her Aunt Pansy, local to Denver, is cooking a healthy high magnesium meal. During the meal Taylor was having trouble keeping her food in her mouth because Pansy’s stories about funny family events kept her bursting out laughing. The support from the Lew family continues to be stellar.

Later, just before bed, she got a few letters from well wishers that were great fun for her when we read them. Thanks for all the love everyone brings to this process.

A research paper headed up by James Dahlman, Taylor’s lab supervisor at MIT, was recently published in Nature Nano. Taylor is one of the many authors on the paper. This makes her a published researcher and I am very proud of her. After talking about it with a physician here, who was amazed, it apparently is a real accomplishment and even more so considering she is just a sophomore.  Here is a link to the paper:

http://www.nature.com/nnano/journal/vaop/ncurrent/full/nnano.2014.84.html

Mentioning this here is bitter sweet because it brings me back to when I first learned this news. It was around the second or third week after the cardiac arrest. James came into the hospital to check on Taylor and told me he just learned that the paper was going to be published. It was a real mix of emotions. On the one hand I was happy and proud of Taylor. On the other I wondered “is this the last time I get to feel this way about Taylor?”

Luckily it was not. I feel this way about Taylor, and my son Nathan, nearly every day.  Thank you all for your prayers, positivity and kindness. Thinking of the journey from when I first heard this news to now seeing it published, makes me know that those three things can make anything happen!

Congratulations to James and all the authors who worked on the paper.

Taylor has the most incredibly cute way of talking. It isn’t anything like the way she used to speak. It is kind of childlike and usually brief. The words flow out of her slowly and are drawn out. Because the physical act of speaking is labored she has a lot of one and two word answers. “Okay”, “yum”, “cool”, “later”, “a little” are some examples. She can also converse in full sentences when necessary but usually finds a way to express her thoughts more succinctly.

Because her speech is so cute sounding, she is so small, and she has such a playful fun attitude, it’s easy to fall into thinking about Taylor like a child. I see therapists doing this and Taylor is content to let them, however; occasionally Taylor shows her scholarly side when she has to comment on something technical. When she starts talking about the research she did at MIT it is a really weird because she sounds like a four year old discussing the finer points of nano-particles.

While her speech may be relearning how to sound like her old self, her intellect is already fully there. This weekend she and I listened to “And Then There Were None” by Agatha Christie. Taylor amazed me by figuring out much of the plot by the end of the second chapter. She even postulated the “who done it” correctly but dismissed it as not likely due to impossible curves thrown by the author.

It will be wonderful when Taylor is fully recovered but while this is happening it is a joy to be around this cute/smart beautiful person.

A few days ago in physical therapy, Taylor’s PTs stood her up. Afterwards, her PT said, “What do you want to do next?” and Taylor said, “Bring on the walker!” She has said this before, as she is adamant about getting back on her feet, but each time prior, Taylor was told that she was not ready. However, on that day, they decided to give it a try, and Taylor walked using the assistance of a special walking machine and her PT. This was on my birthday, and it was the best present ever!

If anyone is having trouble seeing the video please let me know. This is a first attempt to add video to this website, and I want to make sure everyone can see it. (A big “thank you” goes to Kit’s cousin, Pansy, for shooting this particular video with her phone).  Hopefully, there should be more videos of Taylor to come.

In addition to walking, she and I play catch with a ball now. Every day she is doing more and more, and it is exciting to see her develop each day.

Magnesium Update: Her levels are still low, and we are working with different types of pills that are easier to keep down. Yesterday, she was able to keep down two slow-acting magnesium tablets without feeling queasy by taking them with meals and just before going to sleep.

Yesterday and today, we received a Spring snowfall in Colorado!  It was beautiful how the snow fell and clung to the trees, making everything white.  The snow and cold-ish weather meant that Taylor could not go outside to the gardens and enjoy the sunshine, but now that she has her life vest (defibrilator vest), she has been able to go to the apartment to have meals with us (John and Kit).  The meals away from the hospital have been really nice because it makes it feel less like a hospital stay and more like home and normal life.

Taylor’s physical and occupational therapists have also given us a number of exercises that Taylor is suppose to practice outside of her regular sessions.  We do these exercises on a mat table (a large table with a gym mat top surface, which sits low to the ground) during off hours (weekends and after 6pm weekdays) in the Therapy Gym.  Surprisingly, we have all enjoyed these sessions.  Taylor likes being able to lie on a flat surface, roll around, and move her arms and legs wherever she wants, since she is usually confined to either her hospital bed or wheelchair.  We enjoy spending this “playtime” with Taylor and bonding with her.  We are getting to know and love Taylor on a whole new level.  In return, Taylor, who prior to her accident was fiercely independent, has been very appreciative (see May 7 “Conscientious” post) of us being there/taking care of her and shows us with her affection.

Today Taylor woke up dealing with a progression of issues that seemed to indicate a negative outlook. First, a few weeks ago, she was not allowed outside for heart reasons. Then she had a low magnesium value that led to her taking pills that made her constantly nauseated. The values stayed low so the pills were doubled, which led to more nausea and a loss of appetite. Then they were doubled again, which led to vomiting and missed therapy sessions. Then she went on magnesium IV that was hard to place and had to be replaced a few times with several needle sticks each, resulting in constant muscle irritation in her left arm. Then the I-V dose was doubled making her stay in bed longer and causing more muscle irritation. All this time, Kit and I are doing everything we can to shove pumpkin seeds, bran cereal, halibut, spinach and other high magnesium foods down her throat. Finally, to get even more magnesium in her system, they returned to using the feeding tube which Taylor was hoping would be removed instead of reinstated. The end result was a tough situation for Taylor to keep her spirits up.

All of these events add up to a setback. Setbacks are to be expected in any recovery but that doesn’t make them any easier. Because Taylor has an amazing reputation around the floor for always being so cheerful and happy, it was hard for all her caregivers to see her so down, especially me. The staff at Craig has been incredibly caring and compassionate through this, including her nurse last night who stayed with Taylor to talk at length in the wee hours of the morning when she woke up very concerned about her situation. Luckily, all this was a minor setback in the big picture of things that could go wrong with a long hospital stay.

Now for the good news: Taylor had a much better magnesium level this morning. So much better that her doctor decided to check it again 5 hours later, just to be sure. The magnesium pills and I-V drip are now stopped. She also now has a life-vest defibrillator that allows her to go outside the hospital for a few hours a day. It was also a sunny great day. We spent some time just hanging out in the garden where Taylor was back to her happy laugh-y self. We had a good laugh about all the goings on and reminisced about some of the fun times from the past. Later we had a great meal, made by cousin Pansy in the apartment I am staying in on the Craig campus. It was wonderful to have a real family dinner after eating in the hospital for so long. Later, Taylor got a few very welcome calls from friends.

We don’t know if the magnesium levels will be consistently good/normal, but it was fantastic to see Taylor so happy again.

Now that we can breathe again, we can reflect on how this episode is also a great lesson about setbacks. No matter who you are, there will always be events that can zap your confidence and darken your outlook. Although dealing with setbacks and overcoming them can be an especially tough slog, the key is to know that they are part of the process, and one should not be deterred when setbacks happen.

Western Factoid: I said dinner, above even though the meal was at noon, because in the west dinner is at noon, supper is at 6 and lunch is when you eat on the go or brown bag it.

I dislike calling the post “Frustration” today, but I also have to be truthful about how we have been feeling lately.  We have been frustrated about Craig denying us access outside.  (They still will not let Taylor go outside.)  We have been frustrated that Taylor has to take high doses of magnesium, which is making her sick.  They have put in an I.V. to deliver the magnesium intravenously, which should not make her nauseated like the oral magnesium.  Yesterday, the I.V. was fine, but today Taylor said it burned when they used it.  She was poked 4 times before they got another I.V. in (more frustration).  The good news is that she was not nauseous today and was able to eat and attend all of her classes.  She even went down to the Rec Room for an activity to make a flower arrangement (which she said was for me – very sweet).

Another piece of good news is that Craig ordered a life vest (a defibrillator built into a vest that one wears under clothes) so that Taylor can go outside and have her heart be protected.  This is the only condition under which the doctors will let her go outside.  The vest does not seem too bulky, but does seem a little uncomfortable.  We are hoping that this can be set up soon so that we can have some outside time this weekend.

With a brain injury, one never knows how the person will change.  After Taylor had her accident, I read many accounts from caregivers and patients themselves who warned not to expect the post-injury person to be the same person pre-injury.  Of course, this is a very scary thought for family members who wonder how their loved one will change because of the injury.  There are certainly some very grumpy patients here at Craig who say nasty things to their caregivers (but who knows whether they were like this before or because of their accident?).  Luckily, Taylor is not one of these people.  She has been very conscientious about not missing her classes, apologizes if she coughs after taking a sip of water because she still can’t cover her mouth well, and says, “Thank you,” all the time.  There are definitely times that she is sad about her situation, and she understands how hard she must work to get back to where she was.  She is quite a trooper.  She actually cracks quite a few jokes throughout the day, especially about her personal care issues.  As you can imagine, not being able to work your arms and legs means that you depend on people to help you with going to the bathroom, bathing, eating, etc.  (Taylor has gotten over being embarrassed with needing help with these things some time ago.)  We even have a few running bathroom jokes about how they do things here at the hospital.

Lately, Taylor has been feeling nauseated and vomiting.  We think it’s because they have been giving her very high levels of magnesium supplement, but it is hard to know for sure.  When she doesn’t feel well, sometimes she’ll be late or miss her classes, which makes her upset (because she is conscientious).  The sickness also makes it hard for her to keep up her weight, which she needs to do since she already lost about 10 pounds since the accident.  She also needs to show that she is eating enough by mouth in order to get the PEG tube out.  Hopefully, this will be resolved soon.