Henry and Ruby Moss

Latest updates on Henry's well-being

Tues., 1/30/01: Some highlights from the past 11 months at MOGC: Now weighs 214 pounds, good muscle tone; trach opening surgically closed Nov. 2000; g-tube removed (just pulled out); drinking water from a glass with or without a straw; voicing continuing to improve with recontinued ST to the point where I don't need to interprete every word for others to have a conversation with him (and he can say very clearly "GO RAMS!"); went to 4 RAMS games at the Dome and Henry drank a beer and ate Nachos; watched other RAMS games on the big screen TV in the Activity Room at MOGC; continues to have PT 3 times a week, and standing on the tilt table (donated by his friends) for over an hour; has heavy duty massage equipment (donated by his friend) that I use to massage him and myself; started e-stim (electrical arm muscle stimulation) treatments; can now lift his arms up on the arm rest of the wheelchair (w/c); can squeeze your hand; can hunch his shoulders; can pull his feet back; practices doing 100 crunches in bed; practices throwing punches when in bed; can assist in turning himself on his side; does not need to get rotated (back to side to back) in bed, he moves himself a little at time; continued OT until 1/27/01; can use mobile arm supports to wipe his face and feed himself holding a sandwich in the left hand and holding the spoon in the right hand; continuing weekly acupuncture, spinal stimulation, energy transference, and taking many herbs and vitamins specifically for stroke patients and nerve ending stimulation; dosage of blood thinner medication has been reduced; continuing daily mass attendance and taking communion, and afterwards Henry rides the halls in his souped-up w/c; had monthly outings to our home, several shopping centers, and parish church; came home everyday during Thanksgiving weekend while his sister, her husband and son, his Mother and her husband were in town; came home everyday during Christmas between 12/22/00 through 01/01/01 while our sons and his Mom and nephew were in town; participates in all activities at MOGC: card playing with side bets with residents (Kings in the corner), bingo (big winner of food prizes), balloon volleyball, etc.; has a male college student who is majoring in Social Work visit him weekly; had several groups of visitors bringing and sharing meals (included special desserts, home made Chinese food, Italian food, Bar-b-cue picnics, etc.) in the large dinning/conference room and outback under the gazebo; had many out of town friends visiting; has a TV full function remote he operates (turning off/on, changing channels and volume) himself from the bed or the w/c and watches cable; has a pointer attached to his RAMS cap which he used to touch the screen on his Vanguard (audio feedback communication device); has a speaker phone in his room (314-382-0107); uses Head Mouse on laptop and sends emails to friends and family (mail him at hmoss@aol.com); does instant mail messaging; has a computer Bonsi buddy (www.bonsi.com) on his laptop; planning on taking water therapy soon (check out web site: www.watsu1.com); planning on flying to Atlanta in April for the weekend; and much, much more.

Wed., 4/12/00: Highlights from 6 weeks at MOGC: Now weighs 200 pounds, after coming there weighing 196. Eating 3 meals every day and taking only 3 of 6 tube feedings. Henry now receives communion daily. Henry is getting stronger as noted by the follow-up visit at BJC on 4/6. Henry really enjoys up all the attention he gets from everyone at MOGC. They really encourage him to voice more and more. Henry enjoys his weekly tub baths. His first outing was a trip to our church for the appreciation dinner. We celebrated our 30th wedding anniversary all day on 4/4! Can you believe, Henry planned the whole celebration! It began with a dozen yellow roses(my favorite color rose) sent to me at work the day before, a special blessing from the Priest at 9:30 AM Mass; a steak, baked potato and brocolli lunch with candles,music (jazz) and sparkling grape juice; and a sheet cake; a gold, engraved heart shaped necklace; and later on several Sisters singing like Angels. The Vanguard finally arrived on 4/4! Trach removed on 4/5! ETC.

Sat., 3/11/00: 2nd week at MOGC: Last week I forgot to mention that while Henry sat at the nurses station during his afternoon feeding, they turned the radio to his favorite Jazz station for his listening pleasure. Also, last Sunday, we watched the Irish dancers put on a very entertaining show for everyone in the large activity room. The Irish dancers consisted of two little boys and over twenty little girls ranging from 3 to 4 years old to about 12 to 13. This week, Henry started wearing his trach plugged all day and night (3/7/00)! The plug comes off for four hours in the wee hours of the morning so that he can wear the attachment over the trach to benefit from the moist compressed air. The wheelchair can now go faster! Instead of one speed, it was adjusted so that Henry now has four speeds: 20, 25, 30 and 40 percent. Henry still goes outside every day, weather allowing. Along with the tub feedings of Jevity, on March 9th Henry got to eat some soft (pureed) foods for breakfast, lunch and dinner for the first time!! Since Henry is also eating foods, the water flush with all tube feedings has been increased from 200 to 250 ml; and the 4AM tube feeding will be eliminated. The Speech therapist fed him the first breakfast that consisted of apple sauce, orange juice, cream of wheat and scrambled eggs. The nurse fed him lunch; and I feed him dinner consisting of mashed potatoes with gravy, pureed corn beef, pureed beets, pureed German potato salad; and pureed fruit cocktail. All of his therapists are very pleased with his continuing progress. At the end of the week, a friend of ours sent him a video tape of the Rams championship highlights. We watched it on the big screen in the large activity center. We have adjusted very well to the new surroundings and gained confidence in the staff.

Sun., 3/5/00: 1st week at MOGC: The adjusting/training period is going very well for all personnel (staff, residents, Henry and family members) and equipment (power wheel chair and communication device) involved. The staff is learning the way Henry likes to have things done, and we are learning how they do things. Henry goes to Mass every morning at 9:30 AM. He started out taking communion (wine) from an eye dropper; and now he takes it straight from the chalice. I went to Mass with him during the middle of the week. After that Mass, I took Henry on the tour of the facilities. He drove his power wheel chair from one end of the basement to the other viewing the largest activity room, physical therapy areas, laundry rooms, main kitchen and beauty/barber shop. Then he drove from one end of the first floor to the other looking at the dinning rooms, offices, patient rooms, and sitting rooms. His room is on the 3rd floor, on which he rode from one end to the other the 1st day. Henry goes to PT three times a week; and OT and ST two times a week. He is adjusting to using a much lesser sophisticated communication device (AlphaTalker) while waiting for his own personalize Vanguard that is due within the next two weeks. Henry really enjoyed his first tub bath since August! He requested a clock for his wall, so I brought that and the staff made sure it got hung where Henry wanted it. The communication vendor made some more customizations to the AlphaTalker. Now Henry can ask for me by name. Henry’s sister, Felicia, visited over the weekend. She came bearing gifts for bed coverings and room decorations to make it more like home. Henry and I were glad to see her and gave her the tour of the facility both inside and out. The weather has been warm enough to sit out and eat on the balcony over the weekend, and for Henry to power his wheelchair outside all around the grounds on both Saturday and Sunday. Our outings were lengthened each time because before we could come back in, Felicia and I had to clean the mud out of the tread of the tires on the power wheel chair. Each time, we managed to get back in and up to the third floor just before the next feeding. At Saturday’s Mass, Felicia watched in amazement as Henry mouthed the Lord’s Prayer! At Sunday Mass, we were both surprised to see Henry not only mouthing words, but also singing along!! Our son Mark and some other friends got to see Henry power his wheel chair. He showed them how well he maneuvers it by "cutting donuts" (turn around and around in a very small area) for them!

Mon., 2/28: Day 1 at MOGC: The good-byes at BJC were hug-full and tearful. Henry was given a little hand holdable Shirlock Hemlock to go along with his hand holdable Superman, a helium balloon wishing him Good Luck, a card, a very hugable and soft blue beary teddy bear; and two large binders full of useful information and instructions from all of the therapists. The transportation was two hours late because the original wheel chair van broke down. So a friend went on ahead to Mother Of Good Counsel (MOGC) Home with lots of bags filled with most of the things from his room, while I waited with Henry in his motorized wheel chair, and the manual wheel chair full of just a few other things from his room. When we finally arrived at MOGC, the hellos were very welcoming, warm and homey. Henry’s side of the room is personalized with decorations made by the staff: a large WELCOME banner with the picture of Henry and I from our web page; and the banner was signed by the staff members with their individual welcoming greetings. Other personalized things on the wall were computer generated instruction signs about his spelling alphabet, and when to wear his hand splints. There were also some quotes from our web page: one with a tennis player and one with a karate person. All of his things brought over earlier from BJC where already unbagged and organized, labeled, inventoried, and put away. Quite a few of the staff and patients made a point of stopping by and introducing themselves. They all made both of us feel very welcome, at peace and quite at home.

Sun., 02/27: Day 93 of 94 (UHC): On Monday, February 28th, Henry will be discharged from Barnes Jewish Hospital and going to Mother of Good Counsel Home for extended care.

Mother of Good Counsel Home
6825 Natural Bridge Road
St. Louis, MO 63121
314-383-4765

Natural Bridge Road two blocks East of Lucas-Hunt Road.)

Sat., 02/26: Day 92 of 94 (UHC): HIGHLIGHTS from the last seven weeks: Henry now has another motorized (controlled by head movement) wheel chair that can turn around in very small places because it has the large wheels on the front and the small turning wheels on the back. He likes this wheelchair design much better. Henry takes himself to therapy in his motorized wheelchair, and he drove to Mass from the north wing to the south wing (about a 15 minute walk). Henry has also accompanied me to the cafeterias and sat with me while I ate. Attached to his wheelchair is a new arm device used to help mobilize his arm. With this device, Henry can lift his arm up and wash his face using a cloth mitt, and freshen his mouth using a spongy tipped mouth stick. Henry took a "trial" amphetamine (with no guarantees) three days a week (Mondays, Wednesdays, and Fridays) over the last 3 weeks (2/7 - 2/25). During this time frame, he showed some increase in hand (crumbled a Kleenex using right hand), arm and shoulder; leg movements (lift left leg 20 times and right leg 10 times), trunk strength (sitting on side of mat unassisted for over five minutes); more tongue movement; and increase in voicing ("My arm", "My leg", "Hi", "How are you?", "I’m fine.", "Mark"). I even saw him arm wresting with one of the patient care technicians. Different members of the day and night nursing staff and therapists from Mother of Good Counsel visited with Henry on three different occasions to get to know him and learn about his care needs. Henry is now wearing a plug in his trach during his waking hours. This is the first of several steps in getting the trach removed. Henry went on an outing during the last week in January. We evaluated the Head Mouse for the Vanguard. This is a sensitive "dot" that can be worn on the forehead or on the center of your eye glasses. It works with a device attached to the Vanguard to pick up the remote signal. We will be ordering this equipment because it is much lighter than the current remote device that attaches to the side of his glasses. We also evaluated the Eye Gaze System and determined that the Vanguard is the better of the two for Henry. In order for Henry to use the Eye Gaze System, He had to wear an eye patch over his left eye in order for it to truly calibrate his right eye. He wheeled his motorized wheel chair around the Galaria shopping center during which time, he used the Vanguard communication device attached to the wheelchair and asked a stranger a question. Henry later used the Vanguard hooked up his lap top computer and used Word to answer a questionnaire about his outing to the Galaria.

Fri., 01/07: Day 42 of 47 (40+7) (UHC): During morning PT, the electric wheel chair vendor got to see Henry operate it. The vendor and the PT decided they will still try and get a different head piece which will be used to control the movement of the chair, but they will get a different brand wheel chair for Henry. Henry has a different ST. He is wearing new and different hand splints. The OT made these splints to keep Henry’s thumbs from falling away from his fingers so that he can do the pinching motion using the thumb and index finger with less effort. During PT, Henry practiced sitting balance on the edge of the mat, assisted and unassisted. While seated for just over ½ hour, the PT put him through his paces. She had him exercise his head by turning it from side to side, and up and down both without and with resistance! Then he did body trunk movements. He leaned far forward and backward on his own, and then rocked back and forth on his own. He also rocked side to side with and without resistance from the OT! During the evening, I loaded AOL software on the laptop and showed Henry a family members business web page and one of the PCT’s personal web page.

Thurs., 01/06: One of Henry’s out of town friends arrived with a new laptop for Henry to use with the communication device.

Wed., 01/05: Day 40 of 47 (40+7) (UHC): During OT, Henry is practicing making a fist, raising his hand up to his head, and pinching a Kleenex between his thumb and index finger!!! The OT shared more information that was obtained from the Eye Gaze vendor about trying out the system.

Tues.,01/04: Henry is continuing to receive and respond to therapy (OT, PT and ST) which he has each twice a day! Henry got up to 1000 ml. on the Volumetric Exerciser.

Mon. 01/03: Henry has a different daily doctor and a different PT. He sat up today for 5 hours. Henry is coughing less but still very deep and hard when he does cough. The nursing staff is beginning to regulate/schedule his bowels by using suppositories every other evening to completely empty him. This will enable him to go all day with having to interrupt therapy sessions. I continue to do the ROM exercises for the arms and legs.

Sun., 01/02: Day 37 of 40 (33+7) (UHC): We watched the Rams loose only their 3rd of 16 games! Rats! After the football game, I wheeled Henry outside the hospital. We sat for ½ hour, talking, enjoying the warm unseasoned-like weather, and holding hands! It was 60+ degrees! Henry started using the Volumetric Exerciser to improve respiratory volume and fitness. The goal is 2000 ml. He is currently at 500 ml. I assisted in transferring Henry from the bed to the wheel chair and back again.

Sat., 01/01: HAPPY NEW YEAR, everyone! While getting dress, Henry teased the PCT (Patient Care Technician) by moving his right leg away from her while she was putting his pants on in bed! Henry broke his sitting up record. He sat up for 9 hours! While sitting in the hallway, Henry was practicing voicing and said "Hi" to the nurses passing by! Then he laughed and made sounds while doing so!

Fri., 12/31: Day 35 of 40 (33+7) (UHC): Henry is continuing to work with the Vanguard and voicing with the ST. The OT worked with his arms and fingers. The OT showed me how to add icons to the Vanguard and she shared information she gathered on the Eye Gaze System. We plan to trial the Eye Gaze System when arrangements are made, first with the insurance company and then with the vendor. During physical therapy, Henry continues to show arm and leg movement with less and less coughing while initiating and during the movements! Michael and I wheeled Henry down to the glass enclosed bridge over Forest Park Blvd. to watch the fire works being set off on the Mississippi River at the Arch at 6 PM. While watching the fireworks, Henry enclosed his hand over mine! We watched the fireworks at midnight from the hospital room, and the new year celebrations on TV.

Thurs., 12/30: During the afternoon, Henry had a session with the neuro-psychiatrist. She will be seeing him twice a week. Henry is coughing less and going longer periods of time without moist air. During the evening, Henry laughed a lot at some jokes. Our oldest son read a science fiction mystery to Henry.

Wed., 12/29: Day 33 of 40 (33+7)(UHC): During morning therapy, Henry continues to practice using the communication device (Vanguard), voicing and sitting balance. During my afternoon "training" sessions with the therapists, Henry wore himself out showing his mother and I all the new things he is now able to do! While seated in the wheel chair, Henry can lean forward bending at the waist (about a 45 degree angle) and hold his head up in that position for about 2 to 3 minutes! Also, while sitting up and while laying down, using one arm at a time, Henry can lift his arms up, and pull his arms down, as well as pull his arms across his body, 5 to 10 times each!!! While lying down, not only can he pull his legs in, but Henry can now push his legs out to the side one at a time, 5 to 10 times! After this work out, his blood pressure was just 123/84! He rested during the evening with less coughing and still some weepiness while I did the ROM stretches/exercises on his fingers, wrists, arms, shoulders, toes, ankles and legs.

Tues., 12/28: Henry’s tube feedings were increased back to 320 ml. and he is now taking only one antibiotic. Henry used the Vanguard to communication with the Psychiatrist. The Psychiatrist says that Henry is much more frustrated than depressed. So she will work with him and help him deal with his frustrations. During PT, Henry worked in gym on sitting balance, trunk strengthening, neck control, and leg exercises. The PT noticed that Henry was pretty fatigued (due to his recent fever/illness), and unable to hold his head up as well as usual. However, he was still able to abduct his hips (move one leg toward the other when lying on his back); AND was able to move his right leg out to the side (abduction) a small amount, several times! Some of his movements are initiated by exhaling (sometimes interpreted as a "cough"). Some refinements are still coming for the electric wheel chair: "rim" control headrest and elevating leg rests. During the evening I noticed that Henry’s intravenous connection came loose and was leaking. It was removed from the right hand and put in the left hand. Henry was very weepy and emotional during the evening. Henry enjoyed our son reading one of the science fiction mystery stories to him.

Mon., 12/27: Day 31 of 33 (26+7) (UHC): During the morning, tests were ran on Henry’s legs again to make sure he had not developed blood clots; and none were found. Morning therapy sessions were missed due to the tests being run on his legs. All during the day, Henry coughed a lot and very hard. Henry was tired and sleepy during the afternoon. At 5 PM, Henry was started back on tube feedings with half (160 ml) of normal amount.

Sun., 12/26: Henry was put on two different antibiotics and clear liquids. He also has staff and streptococci infections along with the urinary infection! Henry and I watched the RAM’s convincingly win again while he was wearing his Ram’s division championship shirt! Although still recovering from the infections, Henry sat up in the wheel chair for over 6 hours! The oxygenation of Henry’s blood was being monitored. When it dropped below 92, he was put on a little oxygen. After an 1 ½ hours, it was back up to 98%, so the oxygen was stopped. During the evening it stayed at 94%. I found out that Henry stopped taking anti-depressants three days ago!

Sat., 12/25: Day 29 of 33 (26+7) (UHC): MERRY CHRISTMAS everyone!! The family exchanged gifts with Henry in the afternoon. Henry wanted to go to Mass. So I was able to take him from the North to the South hospital campus to the chapel to attend the 5 PM Mass with his mother, son and me. It was very emotional and healing for all of us! In the evening, Henry complained of a queasily stomach. He was given some medications for it, and the evening tube feedings were held. Also, the doctor ordered the nurses to do the blood work-up.

Fri., 12/24: During OT, Henry worked independently on the Vanguard. During the evening, Henry appeared tired, but indicated that he was not that tired. I later found out that he had developed a urinary infection. Some of our friends that we normally spend Christmas eve with came by the hospital during the evening to sing Christmas carols and spend time with Henry! He was given a hanging Christmas decoration in the shape of "HO, HO, HO" because he is now able to say it!!

Thurs., 12/23: Day 27 of 33 (26+7) (UHC): During OT, Henry moved his right shoulder to help put his arm in the sleeve of the tee-shirt while sitting up in the wheel chair. OT also worked on neck control when using the Vanguard. Henry surprised the therapists (ST and PT) when he used the Vanguard to say "Speech Pathologist, Speech Pathologist" when the therapists entered the room! During morning PT, the harness for the Lite-Gait was put on Henry while he was lying down and it worked better! Even though still a little uncomfortable in the harness, Henry tolerated it and stayed up in it for 6 minutes! Henry did not get short of breath and his heart rate went from 84 to 108. During afternoon PT, arm and leg ROM exercises were done in bed. Even though seeming pretty tired, Henry showed a little less movement in his right arm, but a little more movement in his left leg.

Wed., 12/22: During morning OT, Henry worked on Vanguard using infrared light on right arm of glasses. During the morning PT, Henry walked with assistance for about 3 minutes using the Lite-Gait. They had to stop after just 3 minutes due to technical difficulties. While in bed during afternoon ST, Henry used the Vanguard (speech communication device) to carry on a conversation with two visitors from work! He used the Vanguard to say good-bye and to wish them Merry Christmas before they left. During afternoon PT of ROM of arms and legs, Henry displayed several different movements while lying down in bed! Henry: (1) touched his thumb and index finger together; (2) was able to pull each arm down while it was supported and raised up above his head; (3) was able to pull each leg separately after it was pulled out at a 45 degree angle; and (4) , moved his legs back together after they were both spread apart at a 45 degree angle!!!! Everyone smiled and either clapped or jumped up and down while Henry laughed after each of his accomplishments!! While sitting on the side of the bed, Henry got very tickled. We thought it best to leave him alone with the PT so he could focus better without an audience. Henry was able to sit on the side of the bed with 5 to 25 % assistance! He was also able to take mild resistance toward left when sitting. His head control continues to improve. PT also applies mild resistance during his head movements from up and down, and from side to side.

Tues., 12/21: Day 25 of 26 (19+7) (UHC): The first time family members entered Henry’s room today, he was practicing independently with the Vanguard. The Vanguard representative was there and had made several new adjustments: (1) "remote" signal for the mouse/cursor is now connected to Henry’s glasses; and (2) a pole mount is now attached to the wheel chair to support the Vanguard. This pole mount can also be used on the bed so Henry can use the Vanguard while in bed. The PT met with the electric wheel chair vendor, and he is ordering a different headrest to be used by Henry to control the movement of the wheel chair. Also, it might be possible to use the Vanguard to control the movement of the electric wheel chair.

Mon., 12/20: The ST did exercises using the Passy-Muir speaking valve. Henry voiced "Mamma"! This was a very emotional moment for him, his Mom and sister. The ST instructed the family members on how to facilitate the use of this voicing device so that Henry could continue to practice for 15 more minutes after she left. Henry insisted on keeping the Passy-Muir device on beyond the time so he could hear himself voice, cough, sigh, moan and cry … .

Sun., 12/19: Day 23 of 26 (19+7) (UHC): Henry was clothed in his RAM’s tee-shirt and cap while watching them win the game and home field advantage! Henry’s one hour outing was a trip with his mom, sister and wife to the Children’s Hospital cafeteria where the large fish tank resides. We all watched the fish and visited while his sister and I had something to eat.

Sat., 12/18: Henry took great pleasure in showing off all of his body movements for his mom! He really surprised her by saying "Mom"!

Fri., 12/17: Day 21 of 26 (19+7) (UHC): Henry showed his sister and a family friend how he could move his various body parts: feet, fingers, arms, lift head off the pillow, and shake his head "yes"! After placing the speaking valve on his trach, Henry said "Hi" to his sister! Henry got tickled and laughed with sound and even sighed with sound! Another friend of ours said he would say "Ho, Ho, Ho" by Christmas, and he did it for her tonight!! An early Christmas present!!

Thurs., 12/16: In the morning PT, Henry worked in the gym on sitting balance. He only sat for about 5 to 10 seconds without help, but he showed improvement in his postural reactions (i.e., movements in attempts to regain balance following a loss of balance). In the afternoon PT, Henry worked in bed on rolling. The PT showed another one of our friends how to do the leg ROM exercises. During OT, Henry watched the ADA (American’s with Disabilities Act) video. Later in the evening, we watched it together along with the "Stroke Education" video. Henry is enjoying the short science fiction stories read to him from "Asimov’s Mysteries" by Isaac Asimov.

Wed., 12/15: Day 19 of 26 (19+7) (UHC): In the morning, the OT worked with Henry on head and neck exercises; and on gravity eliminated arm and hand exercises to see if there was any voluntary UE (upper extremity) movement. The PT initiated treatment with the "Lite Gait" (harness-supported gait/treadmill walking)! Henry "walked" on the treadmill with assistance for moving his legs for about 6 minutes! This is well over what an "initial" treatment time should be, but Henry didn’t want to stop after a couple of minutes! No automatic stepping was noted, however it usually takes more than one attempt to see the stepping. He did show good head and neck control while in the harness! Henry was sitting in the hall by the nurse’s station when I arrived earlier today to start my training with the therapists. He was wearing a Passy-Muir speaking valve over his trach opening! The speech therapist explained that he can wear it during the day under supervision. I was taught how to supervise his wearing of it by using a pulse-oxy monitor. The oxygen in his blood must be 92% or better, as indicated by the pulse-oxy monitor. This speaking valve lets air in, but not out. Therefore, Henry is forced to let the air out through his nose or mouth and employ his vocal cords. After much concentration and effort, Henry was able to do some voicing. He said "Hi", and "Hum" in his own voice! Henry is also happier because the more sensitive and audible nurse’s call button is back!

Tues., 12/14: Today Henry was dressed in a tennis tee-shirt and hospital pants. Since Henry is getting stronger and has more body movement when he coughs, the nurse’s call button was replaced with a much less sensitive one without an audible sound. He was upset with the new call button because he can not tell if it comes on or not when he presses it. I left a note for the OT about this. While I was doing the ROM exercises, Henry indicated that he got his toe nails cut today by the one-and-only foot care nurse, after 4 months!

Mon., 12/13: Day 17 of 19 (12+7) (UHC): I was surprised to see Henry move his left hand and arm in an attempt to grab my arm while I was doing the ROM exercises on his right arm! I gave him permission to grab me anytime! In the evening, Henry had 2 visits by 2 different dogs, Vern and Yankee. Henry moved his left hand and arm when he was asked if he wanted to pet the dogs!

Sun., 12/12:In the morning, Henry requested and USED THE BED PAN for the first time! While getting ready to go from the bed to the wheel chair, Henry MOVED BOTH ARMS AND FINGERS ON BOTH HANDS! Also, while being transferred from the bed to the wheel chair in the Hoyer lift, Henry TUCKS HIS UPPER DOWN TO HIS KNEES almost into the fetal position! While sitting in the wheel chair, Henry watched the RAM’s win yet another game! During half-time, I accompanied the Recreational Therapist (RT) and Henry outside the hospital. We were outside under the heat lights for about half and hour! Yesterday, the RT took Henry on his first outing of the 7th floor of Barnes-Jewish North to see the eel and fancy fish in the fish tank in the Children’s Hospital. On the way back, they stopped at the gift shop in the building he is in. When an adjustment is needed to be made to pull his bottom further back into the wheel chair, Henry HUNCHES HIS SHOULDERS UP AND LEANS FORWARD on his own! Also, when in the bed and being repositioned, Henry helps when being rolled from his side to his back, and from his back over onto his side. Henry was weighed while sitting in a wheel chair. He weighs 191 pounds. (Yes, they did subtract the weight of the wheel chair.) When I asked the evening nurse what meds she was giving Henry, I was surprised to find out he is being given an anti-depressant. Completed ROM exercises in the evening.

Sat., 12/11: Day 15 of 19 (12+7) (UHC): When I arrived, Henry was sitting in the hall by the nurses station. So we visited with the nurses and other friends in the hallway until 6 PM. Henry even had his 4 o’clock feeding in the hall. I was told that Henry MOVED HIS LEG to help the nurse with putting on his tennis shoes earlier in the day!! Later on, while I was doing the ROM on his ankles, Henry indicated that I was not applying enough pressure. He wasn’t satisfied until I used all of my weight when I was pushing his foot forward on my forearm while pulling his ankle back with my hand on the same arm! I also did the ROM exercises/stretches on his fingers, wrists, arms and shoulders. His shoulders are still bothering him, so I took them only as far as it didn’t hurt him. While I was massaging his feet, Henry drifted off to sleep. He made SNORING SOUNDS!

Fri., 12/10: I and other family and friends will take over doing Henry’s ROM exercises for his legs, while PT concentrate on introducing other new physical therapies. In the morning, PT treatment included working on propelling the electric wheelchair. Henry continues to improve with practice! In 45 minutes, the PT only had to use the "kill switch" about 6 times. Henry’s SITTING TOLERANCE IS INCREASING! He sat up for over 6 hours at one time, again today! In the afternoon, the PT did stretches for his lower back and showed another family friend how to do the ROM for Henry’s legs. During ST, Henry practiced using the communication device, "Vanguard". He used it to tell the ST that he was tired and hot (for real), so she adjusted the thermostat! The ST reported that Henry showed 95% accuracy on the Vanguard today!! In the afternoon, Henry used the Vanguard and carried on a conversation with one of the nurses who came in the room during his speech therapy session! Later in the evening, Henry showed me how he LIFTS HIS HEAD UP when the nurse asks him to while she moves the pillow! When Mark stopped by, Henry showed him how he can now move his feet and lift his head up! Mark also familiarized himself with the "Vanguard" communication device". Mark also heard his dad VOCALIZE when he coughed and sighed!!

Thurs., 12/9: Day 13 of 19 (12+7) (UHC): During OT, skin precautions and care were discussed. They watched a video about it called "Don’t Just Sit There". When I arrived at 1 PM today for a 2 PM family meeting with the hospital staff, Henry was sitting in the hall near the nurses station. I visited with him until it was time for him to get his trach changed. The meeting with 10 of the hospital staff members involved in Henry’s day-to-day care went very well. Each person reported on the progress Henry has made, and their plans/goals for him. Everyone’s questions and concerns were addressed. We are all in agreement on getting Henry the aggressive rehab he needs to do as much as he can, and educating me on his daily care and needs. I will be spending 4 hours a week getting hands on training on his daily care and needs. When the trach was changed to a smaller one, Henry’s oxygen level in his blood increased. (By the way, Henry is back on room air yesterday.) Henry indicated that this smaller trach is much more comfortable. After the meeting, I got to talk to the Representative of the company that makes the Vanguard communication device, and to see Henry use it with the infrared sensor mounted on a headband. The Vanguard is very customizable for the amount of head motion; and it can be used to control environmental and computer devices. Henry had a long day. He sat up for over six hours! In the late afternoon, the financial and medical Power of Attorney (POA) papers were signed and witnessed. In the evening, I watched the video Henry saw earlier during the day, while Henry dosed off.

Wed., 12/8: During speech therapy, the therapist said that Henry intentionally coughed and voiced one-third (5 of 15) of the time. Ear, Nose and Throat (ENT) was busy and did not get over to replace the trach. At first, I ignored the movement I felt while I was exercising and massaging Henry’s feet. When I finished with his feet and ankles, I asked him to move his feet. HENRY MOVED BOTH FEET WHEN I ASKED!! First, I asked the patient care technician to come in and ask Henry to move his feet, and Henry did it again! Later, I asked the nurse to do the same thing, and Henry moved them again!! Just before I left for the evening, I asked Henry to move his feet, and he did it again!!! WE NOW HAVE CONSISTENT FOOT MOVEMENT!

Tues., 12/7: Day 11 of 19 (12+7) (UHC): Henry indicated that at morning Group Recreational Therapy they read to him. The ST (Speech Therapist) worked on voicing both in the morning and afternoon, since the on-loan "Vanguard" communication device was being used at Children’s Hospital. Henry voiced 2 out of 10 attempts. A positioning device was requested for the "Vanguard" communication system. The OT (Occupational Therapist) did UE (upper extremity, arms and hands) ROM (range of motion) exercises; and worked with Henry in using the white communication board and mouth stick. The OT also adjusted the hand splits by adding new straps and Velcro. Additionally, Henry is now wearing "stockinettes" for hands to help decrease sweating. Henry indicated that in PT he was put on the tilt table without the boots. I must remember to take his tennis shoes so he can were those when he is up instead of the boots. (The tennis shoes made it in a bag and near the door, but not to the car. Forgetful me!) The Doctor asked ENT to assist with trach-tube change, so the plastic one will be replaced with a smaller metal one tomorrow (hopefully). Doctor added stool "firmer" (versus "softener") to medications. Henry is back on oxygen (30%), because the level in his blood dropped too low (90%). Doctors want a minimum of 93% when on just normal room air (about 22% oxygen). In the evening, I found Henry to be quiet and subdued.

Mon., 12/6: Henry is out of isolation (no more gowns and no more gloves)! The extra tubes from his right shoulder have also be removed! ST in the morning included voice work with intermittent finger plugging. Henry was successful 4 out of 10 times! His voice sounded strained, so ST discussed with doctor the possibility of changing his trach to a slightly smaller one which may help raise the voice quality. OT in morning included successful use of the "Vanguard". ST in the afternoon included more practice with the "Vanguard" while wearing glasses. Later this week, they will try using a "head pointer" (laser) with the "Vanguard". The PT and OT worked with Henry on propelling the electric wheel chair. With the stronger magnifying glasses, Henry was able to see the screen to operate the wheel chair. They say it looks very entertaining and promising!! Henry only ran into the PT once, and he got a big laugh over that!! However, they plan to let him keep practicing! Henry was understandably tired and frustrated today! He went to sleep around 8 PM, and gave me permission to leave an hour later.

Sun., 12/5: Day 9 of 12 (UHC): We watched the RAM’s win the division title! After the game, I took Henry through his paces and did all of the ROM exercises/stretches. No pain in left leg today! He wore both boots as prescribed. Again, I stayed after visiting hours and until he drifted off to sleep.

Sat., 12/4: Today, I did all of the PT and OT ROM stretches and the ST oral exercises. While he sat in the wheel chair once for almost four hours, I put lotion on his feet and massaged them. His left leg was paining him, so he asked for some Tylenol. He didn’t want me to leave early, so I stayed until 10:30 PM.

Fri. , 12/3: Day 7 of 12 (UHC): In the morning, the Speech Therapist worked with Henry on the use of the device (Vanguard) for about one hour. The nurses where educated on the setup for the device. Henry was 80% successful using the device. In the afternoon, the ST got Henry to voice one time. He was too tired for good use of head switch, but he showed the doctors how he uses the device. In morning PT, Henry was on the tilt table for only a short time because he was having pain in his left leg. In afternoon, Henry sat in the wheel chair while the PT did the arm and leg ROM exercises. He also worked on head and neck control while sitting without the headrest. Henry and the PT compromised on the schedule for wearing both boots: ON for 2 hours and OFF for 2 hours during 8 AM to 8 PM time frame. The boots are not worn at all at night. I noticed a "portable" toilet in Henry’s room. He said he used the "Vanguard" and requested to use it! He was assisted by two male Patient Care Technicians.

Thurs., 12/2: Working with ST on both voicing and using the new communication device. Currently, voicing 2 of 10 times. The goal is 5 out of 10. When I arrived, Henry was sitting up in the wheel chair at the nurses station surrounded by three visitors. Early in the evening, Henry got very weary and didn’t want me to leave when visiting hours were over. We talked about a lot of things. I didn’t get him settled down until later in the evening. I left just after midnight.

Wed., 12/1: Day 5 of 12: Worked with ST using the head switch and the new communication device: "Vanguard". When Henry coughs now, he turns his head in the opposite direction from where he is turned facing in order to keep himself from going into the bed railings! This takes a lot of strength and shows how much stronger he is getting in the upper body. Increased trunk strength progress improvement: current week: 5% assist holding for 25 seconds, versus 1 week ago of 50% assist holding for 15 seconds, and 2 weeks ago of 75% assist!!!

Tues., 11/30: Henry was moved two rooms down the hall to #7942, across from the nurses station. Arm and hand exercises were done by OT. Use of mouth stick was used with the new body parts white communication board. A representative from the Prentke-Romich Company met with the Speech Therapist (ST) and Henry to explore options to enhance is communications. They had good success with the "Vanguard". Henry is really doing well using the head switch. I will me with all of them on the 9th. The morning PT was doing just a little leg ROM exercises, because the PT gave up her time to the ST. The afternoon PT included more leg ROM exercises and sitting balance at edge of bed. Henry reached his best unsupported sitting time of 25 seconds!! Henry was weepy most of the evening probably due to the change in room and care takers. I also think he was missing the visits from our out of town relatives, especially his mom who visited him during the afternoon. The family will all return about the middle of December to visit with him again. It took until 11 PM to get Henry settled down, and his things together in the new room.

Mon., 11/29: Day 3 of 12 (UHC): During the morning PT, Henry worked on sitting balance and trunk control. He showed more "postural reactions" (i.e., tried to catch himself when he loses his balance). He also used the tilt table, but his left leg was hurting where the boot straps went around the calf. Also in the morning, the OT worked with Henry on using the mouth stick with the white board used to communicate his needs/wants of while he was sitting up in his wheel chair. In scanning the whole board one time, Henry’s pointed to each one with good accuracy. UE (upper extremities) exercises were also done. During afternoon PT, some ROM exercises were done with legs and feet, and then Henry was taken to x-ray tests on his left leg to eliminate the possibility that there was a blood clot. Henry missed afternoon OT due to going to be x-rayed. OT made a new communication board for him with different body parts and left it in the room. This will be used to aid communication about what body parts need to be adjusted/moved. No blood clot was found! Later on, when I removed the hose from his left leg, I noticed that the skin had been broken in several places with a little puffiness. Henry was quite upset over all of the attention paid to his leg. He didn’t settle down until around 11 PM.

Sun., 11/28: The doctor stopped by and told us that physically Henry is still in good shape: clear lungs, skin brake down totally healed and no blockages. The doctor also informed us that Henry only needs to where the eye patch when "he feels" that his double vision can not be controlled and he needs the help of the eye patch. Henry’s eyes said "AMEN, to that!" Henry sat up in the wheel chair and enjoyed watching yet another football team get tromp by the St. Louis RAM’s! His mom and I massaged, stretched and exercised his back, upper extremities and feet while he sat in the wheel chair.

Sat., 11/27: Day 1 of 12 (United Health Care Insurance): Henry had PT and OT in the morning. He was a little tired, so it was hard for him to keep his head up when sitting on the edge of the bed. He was up in the wheel chair for over 3 hours, most of it out of his room sitting around the nurses’ station. Henry refused to wear the eye patch because he was not seeing double and therefore he did not need it. When I arrived later in the afternoon, Henry was in bed napping. Henry woke up and started crying when he realized I was there. We had a good cry together, before other visitors arrived. Later in the evening, his sons’ conversation kept him laughing. Remind me to tell you the Harvard joke!

Fri., 11/26: Day 10 of 10 (7+3) (Health Partners Insurance): PT in the morning included working on sitting balance and tilt table. Henry was able to sit for 10 seconds with less support (without stool under feet), and without help! On the tilt table at 50 to 60 degrees, Henry was able to stand for approximately 15 minutes. In the afternoon, PT included arm and leg stretching/ROM exercises. Henry was asked if he wanted therapy on Saturday, and of course he said ‘YES’! Henry’s vocal cords are not obstructed, but "normal" as determined by the ENT exam!! Henry has indicated that voice training is a priority over practicing the use of the AlphaTalker device. Hence, both speech therapy sessions focused on voice training. He voiced 5 times today!! The nurse put an eye patch (like a pirate wears) over his left eye. This is to help reduce the double vision and strengthen the right eye. Henry did not like the eye patch at all! He was quite upset about it until it came off in the evening! Henry joined the family and friends out in the lobby area again.

Thurs., 11/25: Day 9 of 10 (7+3): Happy Thanksgiving to all from Henry and family! After an early afternoon dinner, 8 of us all went to the hospital to visit with Henry. Some of us visited Henry in his room a few at a time. Then Henry was rolled out to the lobby on his floor to sit and visit with all of us at one time! It was almost (but not quite) like sitting around the house in the family room after eating a big Thanksgiving dinner. We all talked and laughed; and included Henry in the conversations and jokes. After being up in the wheel chair for almost three hours, Henry was ready to get back to bed. After getting back in bed, I massaged his feet, hands and arms while our son told him more about his college life at Harvard. Henry kept his eyes on Michael, and Michael kept his hands on his dad.

Wed., 11/24: The daily morning arm and hand exercises were done by the OT while Henry was sitting in his wheel chair. In the afternoon, the OT worked with Henry on using a mouth stick to point to basic needs on a white scanning board. The OT worked with Henry on moving his head up and down, now that he is very good at going right and left! The therapist ordered assistive technology catalogues for us. In the gym, the PT had Henry on the tilt table for 16 minutes at a 55 degree angle! Then she worked with him and the new "electric" wheel chair. Henry didn’t find the electric wheel chair to be very comfortable. The electric wheel chair has a monitor that they worked with to find the right level and distance for Henry to see. So several adjustments and/or customizations still need to be made. In the evening, a friend read the "weird news" articles to him. Later, Henry’s sister from Atlanta and I both exercised his arms, wrists and fingers.

Tues., 11/23: Day 7 of 10 (7+3): Henry was evaluated by another health care facility to determine if they could meet his needs when he leaves Barnes-Jewish Hospital. The electric wheel chair arrived! The PT entered Henry’s room driving the electric wheel chair using head motions to propel it, as Henry will do after the therapist learns to use it. Henry is beginning to assert himself more and more. After being repositioned, he will not let the Patient Care Technicians (PCT) nor the Nurses leave the room until all of his body parts are comfortable. Henry shakes his head from side to side for ‘no" (I do mean shake, and not just turn slowly!) when we start doing things to him without asking first. So now we must ask his permission before we begin to do things to him. Henry is continuing to respond to therapy! Henry reached several milestones with the Speech Therapist (ST) today. He is able to BLOW a Kleenex! When he sighed, he did so with his male sounding voice!! The ST told him that his voice box will be evaluated by using a scope that he must swallow; and it will not hurt but be a little uncomfortable. After saying this, the ST asked him to say "Ha, ha, ha" and he did! HENRY SPOKE!!! He surprised himself, his mother, a friend and the ST! Henry started crying when he heard his own voice! He cried saying "Oh, ooh, oooh"!!! This brought his mom and the ST to tears! We are all very thankful!!! In the evening, I accommodated Henry by exercised his legs.

Mon., 11/22: Henry is back in isolation (must wear gown and gloves) due to bacteria in his stool again. The leg sequentials were removed. The PT and OT worked with Henry in the gym in the morning. His sitting balance is still improving. He held himself up when coughing while seated on the mat table. They did the range of motion (ROM) exercises while he was on the tilt table. Henry was on the tilt table for 15 minutes!! In the afternoon, the PT did the leg ROM stretches in his room. Henry mentioned that he wasn’t tired, so the PT promised she will work him even harder tomorrow! The ST asked Henry to count while his trach was covered with her finger. Sound came out for the number two!! Henry was up in the wheel chair twice again today for 2 hours each time. When I arrived this evening, Henry was visiting with another hospital dog. Henry greeted me with a smile and a pucker! After all of his visitors left, I exercised his fingers, wrists and shoulders. While I was doing the exercises, Henry indicated he wanted to spell something. He spelled out "pull fluid down from fingers"!! Then I began to do just as he said! After his "breathing treatment", he was very relaxed and drifted off to sleep. Later, Henry was repositioned and turned to the other side, and he was given his evening medicines. After his feeding was started, he drifted off to sleep again. He wanted his radio before I left.

Sun., 11/21: Henry’s mom exercised/stretched his fingers, wrists and arms in the afternoon; and I did so in the evening. Henry sat up in the wheel chair twice, each time for over two hours each. We all sat up and watched the Rams win another game.

Sat., 11/20: Day 4 of 10 (7+3): Henry was up in the wheel chair twice for over two hours each time! He allowed me to go through all of the exercises today! An OT stopped by and we did the arm exercises/stretches together. Henry "mouthed" the count from one to ten with us while we did the exercises!! We watched TV, napped, watched a little more TV, and listened to the radio.

Fri., 11/19: Day 3 of 7: In the morning, Henry worked hard in the therapy gym. He was able to sit up for 10 seconds without support!! Then the PT took him though all of his arm and leg stretches and range of motion exercises. Also, Henry was able to initiate rolling from his side onto his back one time!!! Afterwards, he had very little energy left for the OT and ST. Later in the afternoon, the PT sat Henry up on the side of the bed and worked on neck movements. Henry sat up for 9 seconds without support!! The insurance company will extend the 7 days to 10 days, due to late paper work on their part! In the evening, I exercised Henry’s feet, ankles, wrists, fingers, arms and shoulders. Then he slept the rest of the evening.

Thurs., 11/18: In the therapy gym, Henry sat over the edge of the mat table. When he saw himself in the mirror, he sat up straighter! He was on the tilt table in an almost upright position for 10 minutes!! With the OT, Henry trialed using a "mouth stick" to point to letters. He pointed out letters and spelled out a message. Other specialist were contacted for possibility of trialing other communication systems. The ST did intermittent trach plugging again, both in the morning and afternoon. In the morning, Henry got voicing when yawning 2 out of 10 times!! The afternoon session with the ST included oral exercises, and was harder because Henry was tired. In the late afternoon, Henry sat out in the hall in his wheel chair for a while! Henry is getting stronger and stronger every day! When he coughs now, he sits half way up in bed, and when he lands his head is sometimes off the side of the pillow and almost on the side railing of the bed, far away from his nurse call switch. This situation happened several times today, so Henry did not want me to leave him alone, because he felt unsafe. So I spent the night so he could feel safe enough to go to sleep.

Wed., 11/17: Day 1 of 7: Today, the therapist started leaving me notes from their daily sessions with Henry. When a therapist asked Henry if he wanted more literature/information on his present condition, he indicated that he was not ready yet. In the morning, the OT took Henry to the gym to do his arm and hand exercises and stretches. The Speech Therapist (ST) introduced Henry to the new electronic device with audio feedback: AlphaTalker. He was asked to spell his name, and he did it using the head activated switch!! For the first time, the ST tried finger-plugging Henry’s trach (preliminary step for voicing). He was able to blow air through his mouth 2 out of 5 times! The PT did leg exercises and stretches. With assistance for balance, Henry sat up on the side of the bed with feet on the floor for 15 minutes!! Henry held his head up 12 minutes on his own!!!

Tues., 11/16: Rehab-day 20 of 20: It took only one therapist to sit Henry up on the side of the bed with his feet on the floor!! Henry showed better back (trunk of body) and head control!!! The Occupational Therapist (OT) wrote down specific instructions on how to use the alphabet to get Henry to spell words. Now Henry’s primary care insurance will only cover "skilled nursing" for 1 more week.!?!

Mon., 11/15:Henry is no longer in isolation!! Henry was very tired in the evening, and he did not want me to exercise him at all. We made faces at each other, puckered and kissed; and he flared his nostrils! After he was repositioned and had his third breathing treatment of the day, Henry just wanted to be quiet and listen to the radio. He fell asleep listening to Jazz on the radio.

Sun., 11/14: Rehab-day 18 of 20: We watched the St. Louis Rams beat North Carolina. He got excited when the Rams defense ran a touch down on a fumble, twice. After the game, I exercised Henry’s arms and legs. He fell asleep in the early evening. Before I left, Henry wanted me to exercise his legs. I did, but he didn’t want me to leave. He started tearing up so I stayed longer. It was after 10 PM before he calmed down enough to allow me to leave.

Sat., 11/13: 10th day of isolation: stool samples taken yesterday. Henry was sleep when I arrived. I sat quietly until he coughed and woke himself up. I got a very large mirror, and Henry watched himself while we did the oral exercises: opening the mouth wide and closing, sticking out the tongue, puckering, showing all of his teeth, etc. Then, I exercised his arms and legs using both the old and new exercises. I assisted the nurse several times in changing and repositioning Henry. He rested most of the afternoon. His vital signs are all good. I assumed he was still a little tired from the yesterday. Before I left, Henry answered YES for the first time by moving his head up and down!!

Fri., 11/12: Rehab-day 16 of 20: I got to the hospital much earlier than usual (1 PM) in order to meet with the therapist while they worked with Henry. The physical therapist demonstrated and then I did some new exercises with Henry’s feet and legs. She also showed me how to properly put on the "boot" and hand splints. I watched the physical therapist and her assistant demonstrate the use of the Hoyer lifting machine to transfer Henry from the bed to the wheel chair. After positioning and getting Henry comfortably setup in the wheel chair with a desk top attached, the speech therapist and Henry demonstrated the communication board they are currently using. When Henry activates the equipment using a switch near his right temple, the lights move across the board where 8 cards have words on them: "suctioned", "changed", "bed", "wheelchair", "pain", "uncomfortable", "tired", and "wife". Henry is asked a question, and when the lights get to the appropriate answer, he turns his head and clicks the switch. Then the lights get brighter and the pre-recorded message plays. For example, "I need to be suctioned." He answered appropriately 100% of the time! The speech therapist also showed me how to "swab" his teeth and tongue. She also left a paper describing the oral exercises she does with him. The Occupational therapist demonstrated and then I did some new exercises with Henry’s fingers, wrists, arms and shoulders. They and his doctors are very pleased with his progress. Henry, of course, wants to see even more progress then he has made. Henry is now able to say NO by shaking his head for side to side!!

Thurs., 11/11: Henry was sitting up in the wheel chair when I arrived. He was ready to get out so the nurse and technician came in and used the "holster" to put him back to bed. After I helped get him settled in bed, he indicated that he wanted his hands and arms massaged, so I did. Later I showed Henry the booklets his sister provided us on the different types of software and equipment that is available for the physically challenged to use to communicate. Some of it is very similar to what he is working with in neuro-rehabilitation. I got another opportunity to use the alphabet to figure out what Henry was trying to communicate to me. Together we spelled out C-O-L-D. So I covered him with two sheets up to his neck and turned down the air conditioner. He was pleased with himself! Henry’s pulse was 84 before his "breathing treatment" and 100 afterwards. I forgot to mention that last night I got Henry to do "exercises" with his tongue. He stuck out his tongue well past his bottom teeth; and he was also able to lift it up! I also got him to practice puckering. So tonight, before I left, I asked him what I could do for him before I left, you know like put on a cassette, change the radio station or turn down the lights. I looked closely at him and he was puckering up. I asked him to be sure. So I kissed him goodnight!

Wed., 11/10: Rehab-day 14 of 20: The switch on the pillow is now a flat yellow smiley face a little bigger than a silver dollar and twice as thick. Henry was put on the tilt table again during therapy. The Therapist have found that auditory feedback works better for Henry than him scanning a board of choices with his eyes. So Henry uses his side head movement to touch a switch on the head rest of the wheel chair when he hears the word(s) that expresses what he needs/wants. This evening, Henry was very quiet and serene with no discomfort in stomach nor left arm! He just wanted to listen to the Jazz station. So I exercised his arms and then quietly massaged and oiled his hands and feet. He drifted in and out of sleep. The liquid feeding was changed from Ensure to Jevity and increased 50 ml to 300 ml but still flushed with 200 ml of water. Just after the feeding, his pulse went up to 120!?! Just before the nightly "breathing treatment" his pulse was down only to 101. Henry had a harder time with the "breathing treatment" this time?!? Before I left, I helped the Patient Technician (PT) get Henry repositioned in bed, "pillowed UP", and changed the "boot" from one foot to the other. The PT called me "nurse" Moss!

Tues., 11/09: Henry is tolerating more sitting. He is sitting at a 90 degree angle. The goal is to get him to sit up straighter. Movement in the neck has increased! He was place on the tilt table at a 55 degree angle for 15 to 20 minutes. His bed is positioned at a 40 degree angle. Changes will be made to the wheel chair over the next two weeks: elevating leg rests with straps, different head rest, and elbow padding. Using head movements, Henry worked on the "intro-talker". An out of town communication specialist will be coming to work with Henry next week on some different communication equipment. Henry continues to have some discomfort in the stomach and left arm. Both settled down after medication and massaging. I set the radio to the Jazz station. I listened to the same Jazz station on the car radio on the way home.

Mon., 11/08: Rehab-day 12 of 20: Henry continues to work with therapists and using different types of communication devices. When they asked what he wanted, using his head movement against a "device", he spelled DOG. This evening they brought the "hospital" DOG (a large friendly golden retriever) to see him. I didn't know he wanted a dog. I wonder what he’ll ask for and get tomorrow! His answer to another question was BOYS. I asked him if he wanted to see his sons, and he cried and indicated YES! I told him that Mark has been working long hours, going to school at night and getting sick alot; and Michael will be home for Thanksgiving. Henry's stomach still pains him. Also, tonight he indicated his left wrist and arm were paining him, so I took it out of the hand splint and gently exercised/massaged it. He wanted the radio on the Jazz station when visiting hours were over.

Sun., 11/07: Rehab-day 11 of 20: Henry enjoyed me oiling and massaging his feet. Henry sat in the wheel chair once today for about 2 hours. I assisted the nurses in using some kind of holster machine in getting out and back into the bed. He watched the Rams game. While seated in the wheel chair, Henry showed me what he could do with his arms and legs: he pushed both arms out straight and lifted his left leg out straight!!! Later on while seated, he lifted both legs out straight!! His stool is beginning to firm up; and he still is having stomach pains. After getting the medications, his stomach pains subside. Again he wanted the radio left on the Jazz station when I left.

Sat., 11/06: Henry did not get up out of bed at all today, because the needed equipment nor enough personnel were available. He has a different type of mattress, ROHO, which is made up of individual air filled modules. This is like the cushion he sits on when in the chair. Henry was wide awake, very alert and full of energy all afternoon and evening! While listening to nature sounds set to music and Native American flute music, I put his fingers, hands, wrists, arms, and shoulders through the range of motion exercises. During the exercises, he offered some resistance in the left arm; and moved his thumb and every finger on his right hand!! He also showed me that he could move both of his legs!!! I saw the muscles in his left thigh flex and he stretched out both legs and moved his feet, one at a time and NOT while stretching nor yawning!! The Physical Therapist came back in while I was exercising his shoulder. I watched while she put his ankles, knees and hips through the range of motion. Afterwards, Henry was now willing to see the pictures that were sent to us from Baltimore of my nephew’s wedding in August. They made him smile at first, but later he cried, but he still wanted to see them. Later, we watched TV "tête-à-tête"; and laughed at the dumb golf commercial with the man who ended up with the golf balls in the back of his head!! Before I left for the evening, I found a radio station he liked. He wanted me to leave the radio on the soft Jazz station!

Fri., 11/05: Rehab-day 9 of 20: During therapy, Henry was put on a tilt table and raise to a standing position for about ten minutes. This evening he appeared tired and in pain/uncomfortable in the stomach. His stomach gurgled a lot . Did get medication for stomach and an antibiotic; but took awhile for the medication to kick in. I read some of the many cards he is still receiving and put them up on the wall so he could see them. Listened to music and went to sleep after being suctioned a little, thoroughly cleaned up and feeding tube started.

Thurs., 11/04: First day in isolation (visitors must were gown and gloves) due to infection. Up in wheel chair twice today: 9:00 to 11:30 and 1:30 to 3:00. Able to get him to smile and laugh. Some more new attachments are on his wheel chair and more equipment in room for communicating and controlling his immediate environment. Learning how to use the head switch to control lights, TV and call nurse. Indicated he worked hard with the new equipment and liked doing it. Still on room air and doing well! Wanted to listen to music on cassettes and not watch TV nor listen to radio nor hear me read for book. Fell asleep listening to flute music (music to do Tai Chi by).

Wed., 11/03: Rehab-day 7 of 20! Henry was sitting up in the wheel chair when I arrived listening to a friend reading from a book. He was very emotional and teary eyed most of the evening. He showed me he could blow by blowing bubbles. Established Hand Splint Schedule: off 10 AM to 2 PM. Has a different kind of nurse call button, now more like a switch box. Started taking antibiotics for bacteria infection in stool. Need to take for 10 days. Around 5 PM, weaned completely off oxygen!! Started on regular room air with moisture! Began to fall asleep before I left.

Tues., 11/02: Rehab-day 6 or 20: The day’s therapy included therapist working with Henry and different augmented communication computer devices and him moving the cursor by moving his head to the side while seating in the wheel chair with a desk top attachment over his lap. I’m told he was able to spell words they asked him to do! Talked with Doctor. We are going to try to get more than 20 days of rehabilitation at Barnes-Jewish Hospital. During the evening Henry was very alert, but admitted he was tired in a good way from the days activities. He indicated he wasn’t in pain, but his stomach was upset. The nurse gave him some medications and it seem to help settle his stomach. Established Seating Schedule: 9:00 Out of bed in wheel chair; 11:30 Return to bed for PT (Physical Therapy); 2:00 Sitting activity at bedside with OT (Occupational Therapist) and PT; 4:00 Out of bed in wheel chair; and 5:30 return to bed.

Mon., 11/01: I related the events of Parent Weekend at Harvard to Henry. He was emotional, but wanted me to continue telling him how Michael is doing and the things Michael and I did together Friday through Sunday. I got to watch the afternoon OT and PT sessions. While Henry was sitting on the bedside, he was prompted to follow the OT’s finger with his eyes only and then with his head from center to right and back to center and then to left He was able to do this many times!! OT asked him if he was tired, he indicated Yes. OT asked him if he wanted to stop, he indicated No! I asked him if he was showing off for me, he indicated yes and smiled!!! They also worked with him on moving his head up and down with more control. The therapists noticed that Henry could suck, but not yet blow; and he could move his tongue forward. They will try to involve his mouth and employ a "straw" like device with a computer to aid in his communications. Took stool sample in order to determine cause of diarrhea. Recreational Therapist (RT) procured cassette tapes (from the Library of Congress National Library Service for the Blind and Physically Handicapped) of the New King James version of the Holy Bible’s Old Testament. We listened to some of the Psalms on tape.

Sun., 10/31: Started having diarrhea in the evening and all during the night, every time he was repositioned. Blood pressure 120/90. Alert but tired during evening.

Sat., 10/30: Changed liquid food from Ensure Plus to Ensure Plus HN (high nitrogen) 1450 calories. Started wearing hand splints all the time.

Fri., 10/29: In acute neuro-rehabilitation wing. No monitoring machines. Still on oxygen (28 %). Visiting hours: M - F: 3 PM to 8 PM; Sat, and Sun. 12:30 to 8:30. Rehab-day 2 of 20 (insurance covers only 20 days of rehab)! First full day of rigorous therapy! With support from therapist, Henry sat on side of bed for awhile. Henry willingly used side head movement to press small soft sided air filled bulb shaped call button to call nurse when needed! Henry was able to move his right thumb a lot!! Established Therapy Schedule with all new therapists Monday through Saturday: PT (Physical Therapy) - 8:30 AM and 11:00 AM and 2:30 PM; ST (Speech Therapy) - 9 AM and 1:30 PM, OT (Occupational Therapy) - 10:00 AM and 2:00 PM.

Thurs., 10/28: Moving to Jewish Rehabilitation (Barnes-Jewish North) in room #7944!!!

Wed., 10/27: Being weaned off oxygen, down to 28 (normal air around 22).

Tues., 10/26: Wheel chair finally arrived! Henry smiled while a nurse rolled him down the hall. Sat in wheel chair about 3 hours.

Mon., 10/25: Being weaned off oxygen, down to 30.

Sun., 10/24: Watched Ram’s football game with two male friends. Didn’t get too excited, but expected Ram’s to win. Appeared pensive most of the day.

Sat., 10/23: Had no problem with feeding after three full days of it!!!

Fri., 10/22: Therapists sat Henry on side of bed and he held his head up after it was initially positioned in place! Sat in recliner chair for 3 hours. Wheel chair is expected to arrive on Monday. Third day of feeding. Pulse in 80’s while feeding! He was in good humor, and smiled and laughed at jokes! Henry showed me how he can move his right thumb several times while I held his hand!!

Thurs., 10/21: Occupational Therapist showed family and friends technique on how to exercise the fingers if hand is swollen; and how to coax Henry to move his thumb.

Wed., 10/20: Vital signs were very good again. Pulse was in the low 70’s to mid 60’s. Alert, yet calm and peaceful. Able to signal with repeated batting of the eyes when something needed attention. Started intake of Ensure (a liquid meal) through the feeding tube again. This time with less difficulty, and heart rate was 66 while feeding. Heart rate usually goes up while feeding. Good coughing. Got a haircut! Sat in the chair for about three hours. Wearing a soft splint-like boot on one foot at a time.

Tues., 10/19 Henry’s vital signs were very good. His pulse was in the70’s. He kept a peaceful countenance throughout the visiting hours day. As the evening went on his gaze became steadier. Good head movement and facial expressions. Less suctioning was needed. Sat in the chair for about three hours. Henry smiled at the mention of the Rams beating Atlanta when his sister, from Atlanta, commented on how everyone had been beating the Falcons!

Mon., 10/18 Today was challenging as Henry wore himself out with a reoccurring gag flex along with coughing spasms. Antibiotics continue.
Sun., 10/17: Henry enthusiastically watched the Rams win again (5-0)! He stayed alert and awake all afternoon and into the evening! Pulse rate back down in the 70 - 80 range; and no temperature!! Henry got so tickled and laughed when anyone asked if he was comfortable, after one nurse asked him earlier and he indicated yes, then she replied "I will suction you then!".

Sat., 10/16: Given magnesium and potassium with the sodium chloride, since their counts in his blood were on the low side. Henry sat up in the recliner twice, each for over 2 hours. He chuckled at a few of the latest God billboard sayings. Doctors changed the type of medication used to help settle his stomach and move his bowels. Evening temperature reached 100 F.

Fri., 10/15: Henry still has a distended and gaseous stomach, so Doctors started another method for solid elimination -- continuous. Doctors don’t know why Henry started uncontrollably gagging now, when being suctioned. Sat up in recliner again for about 4 hours without getting uncomfortable! When Henry is able to go for more than an hour without needing to be suctioned; he will be ready to go to the rehabilitation unit. Might move to Jewish Hospital, part of the Barnes-Jewish-Childrens (BJC) Hospital complex, for rehabilitation next week!!

Thurs., 10/14: Sat up in recliner once for over 4 hours! Therapist worked more with head movements. Stomach distended, again. Regurgitated twice while being suctioned in the evening. Stopped liquid food and started up intravenous nutrient at 8 PM. Made direct eye contact with visitors.

Wed., 10/13: Sat up in chair only once. Very good head control and much more mouth movement. Very good bowel sounds. Skipped 6 PM feeding, because aspirated the 2 PM feeding. At 10 PM, intravenous nutrient feeding stopped, and increased liquid food feeding (1 can). Evening temperature 99.6 F (37.6 C). Pulse rate still 100+; and again went up 10 points when feeding.

Tues., 10/12: Appropriately used the soft call pad to call the nurse!! Sat up in the recliner twice. Food feeding still ½ can. Pulse rate 100+; and goes up 10 points when feeding. Evening temperature 99.6 F (37.6 C).

Mon., 10/11: While sitting up, Henry held his head more upright and coughed more naturally without any strain. Started back on liquid food using G-tube!! Trying even harder to communicate through many different facial expressions!

Sun., 10/10: Sat up in recliner and watched the RAMs beat his 2nd favorite team, San Francisco! His friend brought him souvenirs from the RAMS game: a pennant, caps and a cheerleaders calendar. Henry requested his glasses and really moved his head side to side to, and up and down to look at the pictures on the calendar! Lovingly watched our niece from Memphis and her 20-month old son interacting with each other and with him.

Sat., 10/9: Henry said "no" by moving his head from side to side!!! Henry listened to cassettes of classical music he liked as a child: Pere Gynt Suite, Forest Murmurs, and Prelude to Lowengrin. Resting pulse rate almost back to his normal range (60 - 70), now: 70 - 80 range!!

Fri., 10/8: Sat up in recliner for over 4 hours!! Occupational Therapist worked with Henry for over 30 minutes. The smile came back to his face, and he laughed!!! Again, he went for over 3 hours without needing suctioning!! Was able to cough and clear his throat himself! His slightly distended stomach was relieved with a gentle but assisted elimination!!

Thurs., 10/7: The smile came back into Henry's eyes!!! Preparing for rehabilitation: fitted for a wheel chair!! Listened and meditated to a cassette of Native American flute music. Resting pulse rate went back down: 92 - 110 range! Over 3 hours passed before he needed to be suctioned!!!

Wed., 10/6: Appeared very drowsy, but indicated he was not tired. Aspirated his G-tube feeding twice today. So this evening’s G-tube feeding was stopped; and intravenous nutrient feeding will start at 10 PM. Resting pulse rate now higher: 110 - 130 range!? Starting wearing "Function Position Hand Splints" at night time.

Tues., 10/5: Earlier in day, wore himself out coughing a lot. Increased oxygen level seemed to reduce coughing spells. Taken last of the antibiotics! Offered resistance when I moved his right arm to make a muscle. Beginning to seem a little down and disinterested. I couldn’t get him interested in anything, nor make him smile or laugh.

Mon., 10/4: Coughed up more and had to be suctioned less often. In my presence, Speech Therapist worked with Henry to mouthed words, and to try to make sounds by covering the tracheotomy opening.

Sun., 10/3: Watched RAMs win game #3 while wearing Rams’ cap and #80 (Bruce) football jersey while seated in recliner for over 3 hours. Less alert than usual, and dozed off both during and after game. Stomach no longer distended! Resting pulse down to 70 - 90 range (was over 100, and normal is in 60 - 70 range). Lifted his right hand up, again!

Sat., 10/2: Urinating on his own!!! Raised his right hand UP!! Opened mouth and moved tongue forward to cover the top of his bottom teeth! Forgotten to mention that about mid-week a "soft touch Nurse call pad" was made available for Henry to use with his side to side head movement.

Fri., 10/1: Indicated not tired, but kept eyes closed most of the time. Appeared very pensive. Strong cough getting stronger! Laughed at jokes. Made anti-gravity movement of right arm.

Thurs., 9/30: A little less responsive today because of an uncomfortable night: feeding regurgitated and stomach slightly distended. Not in any pain and did have one elimination. Feeding quantity reduced to half, and the kind of feeding liquid changed. Temperature back to normal! No longer in isolation!!! Sat up twice today!! Listened to stories on cassette by Louis L’Maur. Laughed a little while sitting up watching TV.

Wed., 9/29: Sat up in recliner chair twice during the day. Mouthed "OK". Bladder infection, so tube removed. Started wearing the multi-podus system (boot), alternating each foot every 2 hours. Sneezed several times.

Tues., 9/28: Another fever: 102. Changed 2nd antibiotic. Moved right arm.

Mon., 9/27: Spiked a high temperature of 103 F. (39.6 C.) around 5 PM. Secretions samples taken for cultures. Given Tylenol at 5:45 PM. Temperature broke around 9 PM. More Tylenol given around 9:30 PM with other meds for stomach acids, secretions and stool softner. Doctor prescribed ANOTHER antibiotic for him to take later tonight. Consistently opened mouth when asked.

Sun., 9/26: Watched Rams game while sitting up in a recliner; and got very involved and excited!! Laughed at nurse’s jokes! Moved middle finger on right hand and lifted right hand up!! Mouthed "Hi" and "OK"!! When left arm was bent to make a muscle, he resisted on both upward and downward motions. Sat up in recliner twice: at Noon and at 6 PM.

Sat. 9/25: Looked at Karate award his son received for him and expressed mixed emotions with tears. Lifted head up from pillow, as well as turned it both to the right and left looking at visitors who were talking. Moved right arm. Mouthed "OK" and "Go home"!! Again, pushed back once on both sides when each leg was bent and lifted up to his chest!!

Fri., 9/24: Remembered to bat his eyes when I mentioned I went to the beauty parlor! Pushed back on both sides when each leg was bent and lifted up to his chest!!

Thurs., 9/23: Moved right arm across the pillow and up to his chest; AND pushed back when I lifted and bent his right leg up to his chest; AND mouthed "Bye Bye"!!!! Our friend stayed with Henry while I went to the beauty parlor. She told him to bat his eyes when he sees me the next day.

Wed., 9/22: Put in isolation in room #7228 in the Pulmonary wing of the hospital near Queeny Towers. This is due to another infection in his "sputum". Moved his right arm again AND pushed back when I lifted and bent his right leg up to his chest AND he stuck his tongue out up to his bottom front teeth!!!

ICU: Tues., 9/21: Moved right arm, turned right leg inward, moved big toe and toe next to big toe on right foot!!!!

ICU: Mon., 9/20: Opened mouth wide enough so his tongue could be seen! Visitors started reading a book to him: THE PERFECT STORM by Sebastian Junger.

ICU Sun., 9/19: Moved right hand up across the pillow and lifted it several inches in the air!!

ICU: Sat., 9/18: Opened and closed mouth (not just separating his lips) on command! Laughed! Moved right arm across pillow all the way across his stomach and up to his chest!!!

ICU: Fri., 9/17: Laughed several times, one right after another!!!

ICU: Thurs., 9/16: Laughed for the 1st time that I've seen!!!! Separated lips and put them back together on command!!
. . .
Fri., 9/10: Moved back to ICU after developing pneumonia.
. . .
Thurs., 9/2: Held head up while held in a sitting position on the side of bed!
. . .
Tues., 8/31: Moved out of ICU!

Henry and Ruby Moss

About Henry's most unfortunate physical condition

Henry Moss Rehab Trust Fund

Latest updates on Henry's well-being

Associated Links: