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.

Taylor has not been allowed to go outside for about a week now.  The beta blocker for her heart got changed from propanolol to atenolol, and on one of the first nights after this switch, her heart rate went up to 130 beats/min, probably from a bad dream or something.  The atenolol dose got adjusted, and her heart rate has been fine since, but because of this incident, none of the doctors or nurses will allow her to be outside anymore, even if she stays on the hospital grounds.  She is on a heart monitor, but they don’t know how good the signal is from her wireless monitor to the nurse’s station.  The speech therapist even suggested that maybe a nurse could come out with us, if just for 30 minutes, but they said, “No.”  Unfortunately, the senior neurologist on Taylor’s medical team, who would have a say on this, has been on vacation for 2 weeks.  Taylor will eventually get a defibrilator, but the logistics of this have not been worked out yet, and until she gets one, she has to wear a heart monitor 24/7.

Thus, we have been indoors all weekend, despite the beautiful Colorado Spring weather.  However, we were able to pass the time with visits from family and listening to the 2nd book of “The Hunger Games” triology, “Catching Fire.”  On Saturday night, Cousin Tracy and her husband, Michael, came to visit with homemade shrimp and chicken dumplings and clam chowder (yum!).  On Sunday, Uncle Hung came to visit with his ukelele and sang us some songs.  We also worked on a crossword puzzle.  The rest of the time, we listened to “Catching Fire,” (and finished it), and we are now listening to the 3rd book, “Mocking Jay.”  Tomorrow, the therapy sessions start up again.

After being away from Taylor for about a week and a half, I see noticeable improvements in her movements.  She can move her right hand up to her face to scratch her nose, for example.  She used to be able to only kick her right foot out, but now she can kick her left foot out as well (although her right kick is still stronger).  She is starting to be able to turn herself on her left side while lying down.  She no longer needs the side head rests on her wheelchair to keep her head upright.  Both of her arms are not so rigid anymore, and she can wear the splints less often.  Today, the occupational therapist got Taylor to kneel with her arms and elbows up on a large padded square so that Taylor was pretty much upright on her knees.  She was able to kneel upright more-or-less by herself without a lot of support.  And the eating…wow!  Taylor is eating everything (no more pureed foods) and is no longer on her tube feeds.  If she continues to eat well and maintain her calories, the PEG tube is going to come out really soon! Tonight, Cousin Pansy and her son, Joshua, came with homemade chicken tortilla soup and a special treat…Haagan Daz ice cream!  It was so good, that Taylor had 2 bowls of ice cream!

Taylor is eating more solid food. This morning, she had almost one whole large pancake (with butter and maple syrup, of course). Lunch was a small dish of creamed soup and 1/2 an avocado (with lemon, of course), and at dinner, Kit’s cousin Pansy and her son, Joshua, treated us to some take-out sushi. Taylor ate a whole serving of miso soup, one piece of albacore sushi with rice, and 1/2 avocado with lemon. Her dietician has decreased her PEG tube feeds in an effort to stimulate her appetite, and it’s working!

On another note, Taylor’s speech therapist said that Taylor has already exceeded the goal she set for Taylor when she first arrived at Craig – talking.  So now new goals have to be made. This is all good!

One of Taylor’s favorite foods is avocados. Now that Taylor can eat mashed up food, she can eat smashed avocado! Last night, Kit’s cousin, Pansy, brought over 2 beautiful avocados. Today, we surprised Taylor at lunch with 1/2 of one avocado that had been mashed with a fork. She ate it all! (She did say, however, that it needed lemon.) This is saying a lot because Taylor is not digging the mashed potatoes or cream of whatever soup she has been getting. For dinner, she ate the other avocado half easily, especially because we found some lemon to go with it.  This was a nice treat that brought some California home to her.  Tomorrow, she will eat the other avocado 🙂

Therapy-wise, Taylor went to her usual physical, occupational, and speech therapy classes. She got a smaller wheelchair today because the staff did not like how she sat in the other chair, and she got custom fitted for a new splint on her left hand. In speech therapy, the therapist gave her some small pieces of cracker to eat, and tomorrow, Taylor can start to try to eat more solid foods that soften easily with liquids.

We have finished listening to “The Hunger Games” and are now listening to the next book, “Catching Fire.”

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.