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 has been doing her thing; going to class by day and dancing and singing (in her bed) by night. Just like any 20 year old!
In between all the work and recreation she has gotten a steady and very welcome stream of communications from her friends and extended family. Each night she tries a new flavor of tea from a special tea selection sent to her by a friend. She also gets various items sent to her to help with her therapy, including media gift cards. She got a couple of really cool tee-shirts though we don’t know who sent them (apologies if you told us and we misplaced that piece of information.) There are also really nice letters that come most days. Each one is read to her as soon as she gets it.
Her phone buzzes occasionally and she is quick to ask if she has a new text message and if so loves to hear them including occasional messages with links to news stories her friends think Taylor might like. She responds with brief messages back mostly giving thanks.
In addition to the communications, Taylor is also visited by her extended family here in Denver and really appreciates spending time with her aunts Pansy and Tracy, uncle Hung and their families. We have found that the therapy gym at 6PM is a great place to let the visiting kids run wild during a visit.
These moments are the highlight of Taylor’s day and she is so happy to get them. Thank you all for your touching sentiments.