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last updated 3:00PM Eastern Time, 3/22/2001 Week Ten Journal During the tenth week David moved into the Craig Hospital in Denver. Monday and Tuesday were spent doing evaluations and allowing David and the staff to get to know each other better. The real rehab started Wednesday. |
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8:15AM Eastern Time, 3/20/2001 David has arrived in his new home - the Craig Hospital! The wonderful staff at St. Luke's was treated to a pizza lunch over the weekend, and then David made the trip across town in a wheelchair (helmet on, of course). For liability reasons, Kaiser insisted that David ride in an ambulance, but the actual trip was fairly routine and uneventful. David is now settling into his new quarters. He has his own little "fort" - a bed with padded barriers to prevent him from rolling out. He is spending the first couple of days going through evaluations and getting to know his therapists. There is one case worker on staff who will coordinate all of the various specialists who will be working with David. Mom spent some time with him yesterday helping him get to know David - his life, his family, his friends. The other important goal for this first two days is helping the staff get to know David. For the first night, at least, there was one-on-one support for David. When Mom and Dad left for the night, David was getting ready to watch a Harrison Ford movie. He seemed pretty content in his new home. Kathy visited David briefly over the weekend, and was stunned at the very visible progress David had made in just the nine days since her last visit. The swelling in his head continues to recede. His hair is growing back nicely. For a rightie, he is becoming quite adept at using his left hand. We still need to get him focused on the right - and that's where Craig's therapists are sure to help. So we're pretty excited. In the next week or so, Mom and Dad will move into an apartment provided by Craig for families of patients. Then they will start trying to pay a little more attention to themselves and to each other. They have been true champions. I cannot imagine having better parents. Our love to you all, 10:45PM Eastern Time, 3/20/2001 Good evening, everyone. I have some bittersweet news about the Smethurst family that is not directly related to David. You have been incredibly open with us these last few months, so we feel it is appropriate to share this with you as well. Our grandmother, Bob's mother, passed away today. Louise Smethurst Tope has been living with her daughter and son-in-law, Sarah and Ken Sadler, for many years now. Her memory faded some years back, and her health has slowly deteriorated. She joins her husband Ray, who died about three days before I was born in April, 1974, and many of her friends. We know that she is much happier now to have her mind and her loved ones back. Last night, Dad received a call that his mother seemed to be dying. She was having more and more trouble breathing. No one knew whether she would live through the weekend or through the year's end, but her family began its trek towards her. Surrounded by Sarah and Ken, her son Steve, and several of her grandchildren, she struggled quietly for breaths. Steve told her that it was ok, that it was time to go back to Ray, and she trembled, and was still. Sarah bathed her and dressed her beautifully. I cannot tell Grammy's story in sufficient detail to do it justice. From a small town in the South, this tall girl named Louise decided that she would probably have to support herself through life. She moved to Washington, DC and worked her way through law school - graduating tops in her class, although the official honor naturally went to the next best male student. She met Ray Smethurst while working as a paralegal (I think) in his law firm. They raised four children who, in turn, generated ten grandchildren. They purchased some property in Rehoboth, Delaware about a mile from the water because their younger son, Bob, was athsmatic and would benefit from the ocean air. This old farmhouse became "The Beach House" - where hoards of us grandchildren spent various weeks and months during the summers of our youth. Louise looked after us all, and cured everything from a cold to a mosquito bite to a gaping wound with the miraculous Vitamin E. (When in doubt, this would be backed up with a healthy dose of Vitamin C, as well.) Louise was a strong, intelligent, loving woman, and wife, and mother, and grandmother. Dad leaves Denver very early tomorrow (Wednesday) to fly to Washington. He will pick up his other sister Sue Smethurst who is flying in from Toronto, and drive to the Eastern Shore of Maryland to be with his siblings. He will return to Woodberry Forest next week to handle the host of affairs that have undoubtedly piled up in his absence. For several years now, we have missed the wonderful woman that Grammy was. We are happy for her release from the prison that her body had become. We are happy for her return to all of the people whom she loved so much. And with her release comes the release of many of our tears. We love you, Grammy. We miss you. Bob, Johanna, Kathy, David and Jay 10:15pm Eastern Time, 3/21/2001 Two things to share with you tonight - something about David and then a link to another remarkably similar community of support. First, I just wanted to give a general update on David's condition and continuing improvement. I realize that these updates frequently focus on either highly specific details or else tangential stories, and that frequently leaves out the middle ground - a general description of how things are going. So, on the day that David started his aggressive rehabilitation, it might make sense to take a moment to look at how far he has come. Week One - we did not know if David would survive the first 48 hours, but he managed to stabilize his vital signs. Week Two - continued stability, and then increasing movement as the levels of sedation were removed. Week Three - David is extubated! He is breathing fairly well, and starts causing trouble with his left hand. David starts battling pneumonia. Week Four - things looking better and better. David feeds himself apple sauce! Then David spiked a fever caused by meningitis, then there is an emergency surgery when a routine procedure to insert a new drain goes awry. Very frightening weekend. Week Five - David seems to recover from the setback. We think we have lost about five days. David gives high fives to visitors, and finally kills off all of the meningitis bacteria in the blood clot in his brain. Week Six - David starts to show more personality - playing pranks, tossing a ball, flirting with nurses... Friday he stood up for the first time. This weekend, I get to visit him for the first time since the end of week two. Week Seven - The last drain is removed from David's head. He becomes more aware of his situation and seems increasingly depressed. He is responding better and better to therapy, and demonstrates increasing levels of memory and cognition. David is moved out of the ICU, then to St. Luke's in Denver, Colorado. Week Eight - David feels nauseous all week, and the doctors are considering inserting a feeding tube directly into his stomach. David remembers which character is going to kill Sean Connery in the Untouchables. Once the cycle of antibiotics ends, David starts to feel better. Week Nine - David eats very well and this improves his energy, his disposition, his responsiveness to rehab - everything. He moves himself up and down the hall in a wheelchair. With some support, he takes some steps down the hall, and even starts to use a walker under very close supervision. All of the tubes are removed from his body. He continues to thrive in therapy. He is finally accepted to Craig Hospital - to make the move on Monday of week ten! The swelling in David's head continues to recede - the dent where his skull flap was removed is becoming ever more apparent. He is now eating solid foods, and eating enough to keep his body weight and energy up. His left side is totally functional, and we are seeing the very start of awareness on the right - when the therapist was stretching his right arm on Tuesday, David responded with an "ow!" He has not registered pain on the right side before. Also, while holding onto the walker, and with the therapist supporting the right knee, David managed to squat ever so slightly - a movement that requires the participation of both the right and left sides! David is not speaking, but does reproduce certain sounds (aahhh, aawww, naaaah, etc.) during therapy. He is learning to differentiate between yes signals and no signals, although he's not 100% on that yet. If you hold two objects in front of him and ask which is the toothbrush, he might not understand the question. If you hold up a card on which the word "toothbrush" is written, however, he will quickly point to the appropriate object. He is very clearly, then, a visual learner, and this will inform the nature of the rehabilitation program. That's about all the news I have about David.
All of our love, 3:00PM Eastern Time, 3/22/2001 Hi! This just in from Mom in Denver: "Will you pass the following on to friends and family? It isn't concice and to the point, but I want all to know that our hopes and their help for getting Dave in Craig Hospital were well worth while."
Yesterday, for instance, the OT worked on his right arm after the PT had worked extensively on his right leg, bending and stretching it to work on flexibility, lifting and pushing on the left leg to open energy paths to the right. She had him stand and shift weight from left to right leg and back. The picture of the two of them is ludicrous. David stands 6'2"+, towering over Lisa who is taller than his waist but definitely not up to his shoulder and she is about as big around as a dream (as in, "in your dreams", Johanna); but she puts in a knee to lock his right leg if it wobbles, shifts his weight with a subtle move, keeps him stable. He feels totally confident working with her, grinning when she challenges him, frowning when she stretches a limb farther than it wants to go. To work on the right arm, the occupational therapist not only focused on range of motion, moving the arm across the body, up, down, but also on sensation. She used a vibrator on his lower arm, upper, shoulder, checking for response in finger, wrist, arm muscles. She placed arm and hand on a sort of wheeled skateboard for the arm and moved the arm for him across the table, then encouraged him to move it alone. So far it only moves in response to his body leaning forward or real straining in the left.....somehow a sort of energy serge transfers to the right arm causing it to lift. He also feels pain in both right arm and leg if it is pressed too sharply. We don't want him to hurt, but any sensation is a good sign of progress. Because the OT (and Dave and Bob and Kathy and I and the nurses and therapists and doctors) wants to know when Dave means "yes" and "no", she sat in on Speech Therapy as they worked on that issue together. I sat in just to watch and was really impressed. Two 3x5 cards read simply: NO and YES. After Jennifer spent a bit of time with Dave looking over a calendar, determining his birth date, today's date, where he lived, she asked him to show his birth date again. He turned the pages, looking at each month in turn. There were a couple of low "hooahs", definite signs of effort and then he pointed: YES, great Dave. Your birthday is in May. Which day? He looked intently and pointed to the 21. Wow! Almost, one more. And he pointed to the 22. Then they worked on the yes and no cards. Show me YES. He looked over the two cards, picked up the NO and turned it face down, then tapped the YES. Good, Dave. Each time she asked for one or the other, he went through the same process of hiding the face of the wrong one. When he seemed sure of recognizing them, she practiced saying them: Yes and No. Yes and No. He says NO perfectly.....and shakes his head no. Pointing to the yes, he often says NO, as well, and shakes his head no. In the course of their practice, he actually said the word YES and looked as startled and pleased as we were. The problem with aphasia is that though David knows what he wants to say, the words can come out garbled or he will get stuck on the same word, as in "Nah! Nah! Nah!" Then Jennifer asked some questions: Is your sister Mary? (she had met If he has trouble with an exercise, Jennifer takes the blame on herself, "Wow! That was dumb of me to ask that already. Let's work on this instead." When asked to write the word KEY, shown in the picture, he began to draw it. Both therapists chimed in, "Good drawing, Dave! And you are doing it left handed. I couldn't draw that well right handed." etc. They shifted to writing his name which he did well. He traced Smethurst. Tears came to my eyes when he counted to five and I heard his beautiful voice. They commented on how deep his voice is. They also explained that they are working on expressions and words (such as numbers) which are almost automatic, because they will comethe most easily now. As soon as he has to really concentrate on finding the words, the brain locks. All of this is to say that aphasia and aproxia are terrible hurdles, but he isn't afraid and because of all of the positive help, he isn't being overly frustrated by the task. He smiles and even laughs with them. Best of all, last night Guy and Liz Arnold came to visit with their baby (whom David adored in his former lifetime). Liz held up the baby and said, "Dave, you remember Lila." and he said, "Lila". That he now will try a word, unafraid of possibly torturing it speaks volumes about the tone of all his various therapies. Soon he will learn to play pool from his chair and with a device which supports the cue in place of his right hand. He may need a week or so of practice, then pool buddies, watch out. When the recreational therapist was filling out the sheet of David's interests, he was fairly bored, because instead of the visual cards for Yes and No, she just asked and got "nah" and then looked at me for the real answer. The exception was, "Do you like to gamble?" He lifted his hand to say "Nah" and hesited. A twinkle came into his eye and he grinned at me. "That means Yes," she interpreted correctly. Friends who came last night said that David was really relating to them, looking skyward when skeptical, grinning when struck funny. When he was tired, though, he started to wheel his chair around, so they called for the nurse, Dave gave them high fives, and they took that as the signal that the visit was over. I had errands to run and had already departed, but I was pleased that his guests were so tuned in to the non-verbal cues. He likes having guests in the evening, but still can't sustain looooong visits. Therapy keeps him going until around four (the schedule will be more firmed up next week) and anyone who comes for visits of 10 minutes to 20 or so should be out by 8. Hospital visiting hours are officially longer, but that is about what David can enjoy at this point. As his energy increases, so will his social life. Weekends are a wonderful time to visit any time after 10 am, because he has no therapy on Saturday and Sunday. The quality of Dave's friendships continues to impress his whole family. Thank you so much for caring and writing and visiting. You are the folks he enjoys most in the world, the sunshine of his life. When the recreational therapist asked what Dave liked to do best, my response was immediate, "Be with his friends." She interpreted, "Socialize." And my mind balked a bit.....it goes so much deeper than that. We are glad. Love, Johanna |