Tuesday 27 November 2001
FROM MY NOTES:
Brian's main theme for the day was Alana. "I want to see my girlfriend!" and "Is Alana still going out with me?" were common throughout the day. I called her home and the high school and left messages telling her Brian wanted to see her. Brian thought she hadn't seen him at all; she hasn't visited since last week, because her parents wanted her to stay home, take care of herself, and get her school work done. I explained to Brian that Alana had been with him every day, or close to it, up until last week. When I gave Brian Alana's picture (it was in a photo album), Brian carried it around for awhile and kissed it numerous times. It is now kept on his bulletin board. Brian wanted to know Alana's phone number, so I looked it up in my notebook. We worked all day on remembering it; Brian did pretty well with that. Dave wrote it on the back of Alana's picture.
Dave moved us out of the Cheney House this morning. We will be staying in a guest house above a garage in Ashland. Gail Berk, who we met in the ICU Waiting Room a week ago this weekend, offered it to us. It is very cozy, at the corner of Manzanita and Almond, above Briscoe School. We can stay as long as we need to.
(This was another one of the amazing things that came together for us when we were in need. We had to move out of the Cheney House since Brian was no longer in the hospital. Mrs. Berk's husband was in the ICU and we all connected. Strangers, there to help. It wasn't the last time).
Dave came to the hospital near noon, for lunch.
At 9 am, Brian had OT with Marcy. He got dressed, brushed his teeth and hair.
Brian and I worked on remembering between OT and his combination PT/OT session. I asked him what his phone number was, and he gave me 482-5702, our old number from Emerick. Later in the day, he was able to remember his current phone number, with help.
When I came into the Unit near the end of Brian's session with Joyce and Amy, and I was nearly to his room, BRIAN CAME WALKING AROUND THE CORNER AT THE END OF THE HALL!!! Amy was right behind him, hands on the white canvas "gate belt"; Joyce was behind her with the wheelchair. I started crying. "Mom, why are you crying?" "Because I'm so happy!" "Mom, you're so silly!" and a big hug. Throughout the day, Brian practiced walking, only with PT/OT therapists. He can't walk with us yet, though we can help him stand to get in and out of the wheelchair or bed, and to pee (the latter of which he did for the first time after lunch). Amy told us he will probably be able to walk with us very soon.
Brian was VERY excited about walking. Just the day before, he thought he wouldn't be able to. At lunch, when Dave arrived, the two of them bantered and smartassed quite a bit. We are working on Brian eating slowly, chewing and swallowing, and not talking with his mouth full - with some success. he is now using his left hand regularly, and the "left neglect" seems to be diminishing significantly.
After lunch, Dave helped Brian stand to pee for the first time!
The PT Assistant Jennifer, who worked with Brian in the afternoon, had him out of the wheelchair completely. Dave and I helped, too. We walked down to the gym, where Dave and I tossed a beachball and hit a balloon back and forth with Brian. Then Dave and Brian played basketball, with Brian sitting on the mat (off the floor, about 1 1/2 feet) and shooting hoops, and Dave fetching the ball. All the time, we worked his left hand. When Brian was tossing the beachball and balloon, Jennifer had him kneeling. The mat was too hard for Brian's knees, so Jennifer put a pillow under them. After we played, we walked around the hall and back to Brian's room. I noticed that he has a slightly pigeon-toed gait, with the left foot turning in noticeably. Looked like early walking in childhood - but not his stride, once he gained some confidence with Amy, later in the day!
With Marcy during OT, Brian made a lovely card for Alana (which he/we forgot to give her when she visited that evening).
Julie the ST worked with Brian on his notebook. They put in new dividers with labels, including sections for Schedule, Calendar, About Me, and Rules (currently, Rules for Standing and Walking). I worked on three subjects for the About Me section, creating sheets for Brian and i to fill out (which we did between 4 and 5): All About Brian, Brian's Family, About Brian's Heart Attack and Coma. These are geared towards helping Brian answer his questions on his own. The Calendar section contains calendars I made for October, November and December, with special events noted as they come up (or exist, as with his birthday).
Julie's concerns are with Brian's stuttering (cortical/developmental) which is new, and distractions on his wall. He needs to slow down to keep from stuttering, and we will take down a bunch of the stuff on his walls. I have deliberately kept the items with directions or information on the wall next to his bed, to avoid the problem of trying to find them on the other wall.
Dave had breakfast with Dr. Solomon and they discussed appropriate topics. Solomon does not believe discussing high school graduation is appropriate. We talked to Amy about cds, and she still believes that the more techno, disjointed music is not appropriate for Brian.
Dr. Martin came in at 4 pm to look at the ICD. He is not alarmed. The site is swollen, some with fluid, but mostly just the device itself, because Brian is currently so thin. The incision/scar is purplish and thin, which is not usual, but Martin isn't disturbed by that specifically. His concern is with the spot where the incision opened, where there is a bubble of blood/fluid periodically (it wasn't bad when he saw it). But there is no redness or real swelling, no fever. So 10 more days of antibiotics, clean dressings, and observation.
(Later the following spring this area did become a problem, and Brian eventually had to have the entire device replaced and moved to the other side, wires and all)
I told Brian that Dr. Martin (who told Brian his name is David) was the person who put in the ICD, since they hadn't really met (and Brian wouldn't have remembered).
Brian had dinner with Marshall and Kellie.
My sister called while Dave and I were eating.
Alana called just before we left for dinner. She was trying to arrange a ride with Lynn, which she was able to do: they arrived at 7:15 and stayed till 8:30. The adults let Alana and Brian spend time alone in the room. Lynn gave Brian a card case with a family photo of the Kamburys, labeled with names! (Lynn was Alana's step-mom) The adults talked in the hall, with Nurse Merrillynn joining us. She told us about Jesse's Sunday call. Later she told me that none of the staff cares about any of the junk going on between us and Marshall and Kellie, and that Dave and I are doing "a wonderful job". So they all know, although Dave and I have kept it to ourselves.
Brian and Alana had a sweet time together (Brian was already in bed, at his request); we found him there at 7 pm). Alana still needs to take care of herself and school work, so she won't be visiting every day.
We got Brian all settled in bed, with pills taken and peeing done, and I read to him, with the instructions that he needed to be quiet and close his eyes. He DID have to tell us how much he loves Alana- "I love that girl!" - and had to kiss her picture. He fell asleep by 9:30, after Dave had left for our new "home".
Monday, December 17, 2012
Sunday, December 16, 2012
"Am I 18?"
Monday November 26, 2001
FROM MY NOTES:
Brian was in the shower when I arrived at 8 am. He was wearing his shoes from Spain when he came into the dining room. Nurse Annette couldn't find the slip-on shoes that Brian has been wearing (that Dave brought).
Brian had to eat rather more quickly than usual, because he had speech therapy at 9 am.He had his "real" speech therapist, Julie, today. She was gone all last week; Maria-Mercedes will be with him on the weekends. Julie sat with Brian while he finished breakfast, and I left them alone. She is working with him on repetition (repeating questions) and focus. After Julie, Brian had OT with Marcy. Their key word for the day was "focus".
Jimmy and Rosemary visited from 10:30 till 11:00; I was with Brian when they arrived, answering questions, but left so they could have time alone with him. He took them on a wheelchair tour of the Unit. They left for home.
Wendy, who used to live above Brian, Marshall and Kellie, visited with me, and then Brian. Brian was glad to see her; she visited at RVMC but he was barely awake the last time. Caren Caldwell (minister at United Church of Christ where I was the secretary) also visted. It was the first time she had seen Brian.
Brian had PT and OT together at 11 am, with Amy and Joyce. He stood at a table and played Tic-Tac-Toe, and sorted cards into suits. Joyce said he concentrated well during the game, but would forget his place if he distracted himself. He was able to place the cards in ascending numerical order with no problem, but had a little trouble with suits.
Dave arrived for lunch, and I left afterwards.
Brian had PT with Susan, who had him walk with the parallel bars, and he worked on a number puzzle with the OTA, Jaci. He had another PT session with Susan at 3 pm, during which he did exercises on the mat, and walked with the parallel bars and a walker.
Dave reported in the 4:30 slot in Brian's Journal (the one used to keep track of his days) that Brian peed "unassisted" into the urinal bottle. When Brian heard "unassisted", he thought Dave said, "on an assistant", and was distressed. Dave explained what it really said.
Kellie and Marshall visited between five and seven; Dan Ferguson reported that Marshall was only there at the end, briefly.
Dave and I returned at 7 pm. Dan and Marc were there with Brian. Brian tried to to pee standing up at 7:15! Dave left him in the room in his wheelchair, after loosening the belt, and Brian stood up! We had Bryan the nurse go in with him in case of trouble.
The "boys", Dave and I spent time in the room, touring, and in the dining room. Marc played piano a little. Brian and the "boys" joked about being gay lovers, and Dan made Brian a sign saying "I AM 17" because Brian kept asking if he was 18 yet. We talked about scars, and Brian wanted to know if he had a "cool scar" from his heart attack. He kept lifting his shirt and was disappointed to find no scar. We told him he would have one on his shoulder where the defibrillator was out in. He looked at it a little in a hand mirror later, but couldn't see it very well.
Brian asked many questions during the day about what happened and where. He seemed to think the paramedics did something to his heart, put in the ICD; or he somehow got a heart transplant. At one point in the evening he said, "Heart attacks are not good!"
Brian asked Dan's and Marc's ages several times (21 and 19), and apologized for forgetting Dan's birthday party (which he attended). Just before Dan and Marc left, Brian asked, "Will you buy me beer?"
Brian was very interested in his upcoming 18th birthday. "I'm gonna warn you, on my birthday, I'm gonna be out a lot." He wanted to know if he would be out of the hospital on his birthday; when we told him probably not, he was disappointed. We explained we could celebrate in the hospital, MAYBE we could take him out to dinner, and he could postpone other things till later.
I finally made a chart for him: COUNTDOWN TO BRIAN'S 18TH BIRTHDAY, to use as a cue for the "Am I 18?" question, and to count the days. We can cross off each day as it ends. Another theme of the day was: "Are you and Dave married?" We have told him "Yes", but not legally. Dave says "spiritually". Brian decided we are "married enough". He kept apologizing for forgetting our wedding - we told him we didn't have one. He has also forgotten Marshall and Kellie's wedding.
Dan and Marc left at 8:30. Bryan, Merrillyn, Dave and I got Brian settled into bed. He wound down more quickly, and I read a chapter of Through the Looking Glass, during which he fell asleep. Last night, they only recorded 5 hours of sleep.
FROM MY NOTES:
Brian was in the shower when I arrived at 8 am. He was wearing his shoes from Spain when he came into the dining room. Nurse Annette couldn't find the slip-on shoes that Brian has been wearing (that Dave brought).
Brian had to eat rather more quickly than usual, because he had speech therapy at 9 am.He had his "real" speech therapist, Julie, today. She was gone all last week; Maria-Mercedes will be with him on the weekends. Julie sat with Brian while he finished breakfast, and I left them alone. She is working with him on repetition (repeating questions) and focus. After Julie, Brian had OT with Marcy. Their key word for the day was "focus".
Jimmy and Rosemary visited from 10:30 till 11:00; I was with Brian when they arrived, answering questions, but left so they could have time alone with him. He took them on a wheelchair tour of the Unit. They left for home.
Wendy, who used to live above Brian, Marshall and Kellie, visited with me, and then Brian. Brian was glad to see her; she visited at RVMC but he was barely awake the last time. Caren Caldwell (minister at United Church of Christ where I was the secretary) also visted. It was the first time she had seen Brian.
Brian had PT and OT together at 11 am, with Amy and Joyce. He stood at a table and played Tic-Tac-Toe, and sorted cards into suits. Joyce said he concentrated well during the game, but would forget his place if he distracted himself. He was able to place the cards in ascending numerical order with no problem, but had a little trouble with suits.
Dave arrived for lunch, and I left afterwards.
Brian had PT with Susan, who had him walk with the parallel bars, and he worked on a number puzzle with the OTA, Jaci. He had another PT session with Susan at 3 pm, during which he did exercises on the mat, and walked with the parallel bars and a walker.
Dave reported in the 4:30 slot in Brian's Journal (the one used to keep track of his days) that Brian peed "unassisted" into the urinal bottle. When Brian heard "unassisted", he thought Dave said, "on an assistant", and was distressed. Dave explained what it really said.
Kellie and Marshall visited between five and seven; Dan Ferguson reported that Marshall was only there at the end, briefly.
Dave and I returned at 7 pm. Dan and Marc were there with Brian. Brian tried to to pee standing up at 7:15! Dave left him in the room in his wheelchair, after loosening the belt, and Brian stood up! We had Bryan the nurse go in with him in case of trouble.
The "boys", Dave and I spent time in the room, touring, and in the dining room. Marc played piano a little. Brian and the "boys" joked about being gay lovers, and Dan made Brian a sign saying "I AM 17" because Brian kept asking if he was 18 yet. We talked about scars, and Brian wanted to know if he had a "cool scar" from his heart attack. He kept lifting his shirt and was disappointed to find no scar. We told him he would have one on his shoulder where the defibrillator was out in. He looked at it a little in a hand mirror later, but couldn't see it very well.
Brian asked many questions during the day about what happened and where. He seemed to think the paramedics did something to his heart, put in the ICD; or he somehow got a heart transplant. At one point in the evening he said, "Heart attacks are not good!"
Brian asked Dan's and Marc's ages several times (21 and 19), and apologized for forgetting Dan's birthday party (which he attended). Just before Dan and Marc left, Brian asked, "Will you buy me beer?"
Brian was very interested in his upcoming 18th birthday. "I'm gonna warn you, on my birthday, I'm gonna be out a lot." He wanted to know if he would be out of the hospital on his birthday; when we told him probably not, he was disappointed. We explained we could celebrate in the hospital, MAYBE we could take him out to dinner, and he could postpone other things till later.
I finally made a chart for him: COUNTDOWN TO BRIAN'S 18TH BIRTHDAY, to use as a cue for the "Am I 18?" question, and to count the days. We can cross off each day as it ends. Another theme of the day was: "Are you and Dave married?" We have told him "Yes", but not legally. Dave says "spiritually". Brian decided we are "married enough". He kept apologizing for forgetting our wedding - we told him we didn't have one. He has also forgotten Marshall and Kellie's wedding.
Dan and Marc left at 8:30. Bryan, Merrillyn, Dave and I got Brian settled into bed. He wound down more quickly, and I read a chapter of Through the Looking Glass, during which he fell asleep. Last night, they only recorded 5 hours of sleep.
The Second Volume
Sunday 25 November 2001
FROM THOM'S NOTES:
8 am Right through breakfast. Looked at prints of self-portrait then wanted to draw. Drew a great self-portrait at mirror. Made him focus - and he went with it.
9:45 am catch in the hallway, beachball volleyball L hand on table in gym - juggling practice with one ball - High catch/high throw/low catch L to R
MOM:
This afternoon Jessica and Ahsa visited with painting supplies. Jimmy, Rosemary, Mary and Ali visited at the same time, interrupting the painting time. David Silverman was also there. Brian enjoyed everyone.
In the evening, Dan Ferguson and Vanessa Dudley were with Brian when Dave and I arrived. They had arrived during dinner. Brian drew both of the, ending up with one continuous line portrait that is very funny. He wanted to see his other drawings while he drew, to be reassured of his talent: "I'm really fucking good!"
He asked often, "Am I going out with anyone?" And he is now interested in his 18th birthday: "On my birthday, I'm going to buy cigarettes." He wanted to know if he still lived at 84 Emerick Street, and earlier in the day mentioned 747 Butler Creek (where he was then living with Marshall and Kellie).
Questions asked: "Why can't I walk?" "Am I going to walk?" "Dave, do you live up on the hill?" He asked repeatedly if Dave and I are married. We told him "Yes", and Dave said "Spiritually married."
At 8:15, Brian's friends Max Jacobson-Fried, Joel Crumme, and Andres (from Guanajuato). They stayed till 8:30, which is the time we are trying to establish as bedtime. Dave and I helped settle Brian in bed, and I read a chapter of Through the Looking Glass. We stayed till nearly ten, but Brian was not asleep. We heard later that he didn't sleep much.
Apparently, Jesse called Brian around 6 pm this evening. Brian got to talk to Jesse in his room.
FROM THOM'S NOTES:
8 am Right through breakfast. Looked at prints of self-portrait then wanted to draw. Drew a great self-portrait at mirror. Made him focus - and he went with it.
9:45 am catch in the hallway, beachball volleyball L hand on table in gym - juggling practice with one ball - High catch/high throw/low catch L to R
MOM:
This afternoon Jessica and Ahsa visited with painting supplies. Jimmy, Rosemary, Mary and Ali visited at the same time, interrupting the painting time. David Silverman was also there. Brian enjoyed everyone.
In the evening, Dan Ferguson and Vanessa Dudley were with Brian when Dave and I arrived. They had arrived during dinner. Brian drew both of the, ending up with one continuous line portrait that is very funny. He wanted to see his other drawings while he drew, to be reassured of his talent: "I'm really fucking good!"
He asked often, "Am I going out with anyone?" And he is now interested in his 18th birthday: "On my birthday, I'm going to buy cigarettes." He wanted to know if he still lived at 84 Emerick Street, and earlier in the day mentioned 747 Butler Creek (where he was then living with Marshall and Kellie).
Questions asked: "Why can't I walk?" "Am I going to walk?" "Dave, do you live up on the hill?" He asked repeatedly if Dave and I are married. We told him "Yes", and Dave said "Spiritually married."
At 8:15, Brian's friends Max Jacobson-Fried, Joel Crumme, and Andres (from Guanajuato). They stayed till 8:30, which is the time we are trying to establish as bedtime. Dave and I helped settle Brian in bed, and I read a chapter of Through the Looking Glass. We stayed till nearly ten, but Brian was not asleep. We heard later that he didn't sleep much.
Apparently, Jesse called Brian around 6 pm this evening. Brian got to talk to Jesse in his room.
Tuesday, December 4, 2012
End of Diary One
Saturday 24 November 2001
6:10 pm Dave and I visited Brian this morning before heading home for the day and night (in the year's first snowstorm, all the way to Medford). We were with Brian from 8 to 10 am, when it was time for OT with Marcy. Brian was up and getting ready for breakfast when we arrived. he brushed his hair and was ready to roll. Yesterday's themes of paralysis and his year in school continued. I showed him his grades from junior year, and he wanted to know why he had a 'B' in English if he was a straight 'A' student. I explained about the special AP test he took at year's end, which wasn't reflected on the report card, and which was supposed to up his grade to an 'A'.
We continued to re-assure him that he wasn't paralyzed and hadn't been. He is also concerned about us having heart attacks, going into comas, being paralyzed, and choking. He MAY have some choking memories from the pneumonia, but he has also been warned not to eat so fast, so he doesn't choke.
Dave was being silly and obnoxious, and I commented, "But he's obnoxious in a GOOD way," and Brian made a face, smiled, and said, "THAT'S a good joke, Mom!"
Brian and Dave banter a lot, with Brian calling Dave, "You bastard!" and "You're an asshole!", in a growely voice. There's a lot of friendly insulting that passes back and forth. (They still do this!)
Today in OT Brian was going to work on dressing himself.
"You guys, you guys, I want to warn you. I'm going to be asking a lot of questions today."
Brian got to talk to Alana on the phone!
(11/25) (7:15 pm) According to the notes in Brian's Journal (Memory Book) he got dressed and started his laundry with Marcy the OT. With the PT, he tossed the ball and walked with the parallel bars (Thom saw this later in the afternoon). Thom was with Brian all day, except from about 4:30 till 7 pm. Brian worked with Maria-Mercedes in the afternoon, and told her "I'm very, very tired today."
Dr. Levy visited: Brian's ICD has developed another "pocket" that may be an infection. Dr. Martin is supposed to check it on Monday.
Thom and Brian played left hand catch, in the afternoon. Thom worked with his left hand a lot. When Brian walked in the afternoon, he also stood and played "Connect 4".
Grandpa Jimmy and Grandma Rosemary visited, from around 4 pm through dinner.
In the afternoon Marc and Dan Ferguson visited Brian.
Notes from Thom:
7 pm - Max, Ayal, Vanessa, Jessica E, Matt and 2 others visited. Vanessa and Jessica stayed 'till 9 pm.
9 pm - Read a bunch of Lewis Carroll, seemed sleepy but kept interrupting to say how thankful he was for all the hours reading to him. I left at ten with Brian nodding off.
I asked Brian, after many of his consistent "I'm sorry's" if he felt guilty about something.He stopped and thought for a while, and said, 'I feel guilty for punching Steve (?) in the balls.'
Next time he said he felt guilty about being paralyzed. I assured him that Steve had forgiven him for the low blow (and that perhaps he had it coming anyway) and that he was not paralyzed and he didn't have to feel guilty about being hospitalized.
Vanessa says that when she visited on Friday, Brian made a birthday card for Bubbie, whose birthday was today.
Marshall is driving Brian's car and wearing Brian's Celtic necklace from Spain.
6:10 pm Dave and I visited Brian this morning before heading home for the day and night (in the year's first snowstorm, all the way to Medford). We were with Brian from 8 to 10 am, when it was time for OT with Marcy. Brian was up and getting ready for breakfast when we arrived. he brushed his hair and was ready to roll. Yesterday's themes of paralysis and his year in school continued. I showed him his grades from junior year, and he wanted to know why he had a 'B' in English if he was a straight 'A' student. I explained about the special AP test he took at year's end, which wasn't reflected on the report card, and which was supposed to up his grade to an 'A'.
We continued to re-assure him that he wasn't paralyzed and hadn't been. He is also concerned about us having heart attacks, going into comas, being paralyzed, and choking. He MAY have some choking memories from the pneumonia, but he has also been warned not to eat so fast, so he doesn't choke.
Dave was being silly and obnoxious, and I commented, "But he's obnoxious in a GOOD way," and Brian made a face, smiled, and said, "THAT'S a good joke, Mom!"
Brian and Dave banter a lot, with Brian calling Dave, "You bastard!" and "You're an asshole!", in a growely voice. There's a lot of friendly insulting that passes back and forth. (They still do this!)
Today in OT Brian was going to work on dressing himself.
"You guys, you guys, I want to warn you. I'm going to be asking a lot of questions today."
Brian got to talk to Alana on the phone!
(11/25) (7:15 pm) According to the notes in Brian's Journal (Memory Book) he got dressed and started his laundry with Marcy the OT. With the PT, he tossed the ball and walked with the parallel bars (Thom saw this later in the afternoon). Thom was with Brian all day, except from about 4:30 till 7 pm. Brian worked with Maria-Mercedes in the afternoon, and told her "I'm very, very tired today."
Dr. Levy visited: Brian's ICD has developed another "pocket" that may be an infection. Dr. Martin is supposed to check it on Monday.
Thom and Brian played left hand catch, in the afternoon. Thom worked with his left hand a lot. When Brian walked in the afternoon, he also stood and played "Connect 4".
Grandpa Jimmy and Grandma Rosemary visited, from around 4 pm through dinner.
In the afternoon Marc and Dan Ferguson visited Brian.
Notes from Thom:
7 pm - Max, Ayal, Vanessa, Jessica E, Matt and 2 others visited. Vanessa and Jessica stayed 'till 9 pm.
9 pm - Read a bunch of Lewis Carroll, seemed sleepy but kept interrupting to say how thankful he was for all the hours reading to him. I left at ten with Brian nodding off.
I asked Brian, after many of his consistent "I'm sorry's" if he felt guilty about something.He stopped and thought for a while, and said, 'I feel guilty for punching Steve (?) in the balls.'
Next time he said he felt guilty about being paralyzed. I assured him that Steve had forgiven him for the low blow (and that perhaps he had it coming anyway) and that he was not paralyzed and he didn't have to feel guilty about being hospitalized.
Vanessa says that when she visited on Friday, Brian made a birthday card for Bubbie, whose birthday was today.
Marshall is driving Brian's car and wearing Brian's Celtic necklace from Spain.
Monday, December 3, 2012
"Thankful Day"
Friday 23 November 2001
2:37 pm We arrived at 8 am this morning. Brian was in bed, looking peaceful and content. He told me he had a bad dream, dreamed he was paralyzed, then dreamed he could walk, which was great. The dream about being paralyzed was "horrible". He was concerned about being paralyzed all morning; we got him to move his legs to realize he is NOT paralyzed. "I can walk!" and we tell him he WILL walk. Amy told us this morning that during today's OT/PT session with she and Joyce, Brian stood in front of a table, working with colored blocks (sorting colors on sliding game) for nine minutes, and ten minutes! He leaned with one arm, but that was it! Amy also said that during their staffing Wednesday, they estimated/expressed the hope that Brian would be out in FOUR WEEKS, and that he would be on his feet, with supervision! Yay! Nothing yet is definite, but Amy is hopeful.
Brian is touring around the Unit - and down the hall outside it - in his wheelchair, using his feet. He can push/pull open the doors to get out, but Dave has also taught him to push the operating button ("a cool operator!")
Brian was afraid to leave his room for a while late this morning, because he thought he would have another heart attack. Dr. Solomon was concerned enough that he listened to Brian's heart, and talked to us about reassuring Brian (which we have been doing). We also just went out the door with him, to prove he wouldn't have an attack.
Maria-Mercedes, who is Brian's TEMPORARY speech pathologist, is working with Brian on SLOWING DOWN his speech. He slurs too much still, especially when he is tired. (This still happens, and he still needs to slow down at times)
On his way to afternoon PT with Amy and Joyce, Brian said he was still hungry. "Would you like a little snack?" asked Amy. They were headed towards me, and Brian pointed and said, "Martha!", then reached out and we kissed.
(The kissing on the lips was something that we did for quite a while, because it was part of Brian's developmental process. He was still a little boy in his return to us, and the kissing was a normal part of the stage he was in. It made some people uncomfortable, naturally, and we made sure Brian respected their feelings and did not push it - although it sometimes became a game. Other people attempted to shame him into not doing it. Eventually, he grew out of it. )
During lunch, Brian declared today to be "Thankful Day", because he is thankful not to be paralyzed. Brian has his "wipe-off" calendar on the wall next to his bed, and he writes on it when he wakes in the morning.
Brian's incontinence continues, so he is wearing adult diapers. We are all working on getting him to the toilet on time. Otherwise he wears his own clothes.
7:05 pm In Brian's room with Dave and Kate. Brian has been apologizing for being forgetful today.
Marshall, Kellie and Kate had dinner with Brian. Risa and Vanessa visited and drew pistures for Brian. M and K left at 6:30.
In afternoon PT, Brian stood one time 18 minutes and another one 7 minutes.
Brian tried to write "Feel truly thankful today" in his memory Journal.
"I feel so spoiled today."
Brian predicted he would stand for 21 minutes this afternoon; he stood for 25 minutes altogether!
Kate reports that, while looking through Europe photos, Brian remembered the names of people (especially Tracy), and the Eiffel Tower. He also remembers Paris, Justin, and Oliver.
Brian said he woke up this morning "thinking I was in my Emerick Street bed", and when he wasn't, then the day got weird. "I'm going to be very, very weird today you guys." (Emerick being the street he lived on for 13 years)
Brian wants to be called "Beastie Brian the Badass".
Kate left around 9 pm; she will visit for lunch tomorrow, maybe with her mom. Thom Little called; he will be with Brian for Dave and I tomorrow and Sunday morning. I read Brian to sleep by 9:20 pm.
Brian slept well last night!
Brian is still taking amantadine, an antibiotice, dilantin (last dose tonight) and tradnizone.
2:37 pm We arrived at 8 am this morning. Brian was in bed, looking peaceful and content. He told me he had a bad dream, dreamed he was paralyzed, then dreamed he could walk, which was great. The dream about being paralyzed was "horrible". He was concerned about being paralyzed all morning; we got him to move his legs to realize he is NOT paralyzed. "I can walk!" and we tell him he WILL walk. Amy told us this morning that during today's OT/PT session with she and Joyce, Brian stood in front of a table, working with colored blocks (sorting colors on sliding game) for nine minutes, and ten minutes! He leaned with one arm, but that was it! Amy also said that during their staffing Wednesday, they estimated/expressed the hope that Brian would be out in FOUR WEEKS, and that he would be on his feet, with supervision! Yay! Nothing yet is definite, but Amy is hopeful.
Brian is touring around the Unit - and down the hall outside it - in his wheelchair, using his feet. He can push/pull open the doors to get out, but Dave has also taught him to push the operating button ("a cool operator!")
Brian was afraid to leave his room for a while late this morning, because he thought he would have another heart attack. Dr. Solomon was concerned enough that he listened to Brian's heart, and talked to us about reassuring Brian (which we have been doing). We also just went out the door with him, to prove he wouldn't have an attack.
Maria-Mercedes, who is Brian's TEMPORARY speech pathologist, is working with Brian on SLOWING DOWN his speech. He slurs too much still, especially when he is tired. (This still happens, and he still needs to slow down at times)
On his way to afternoon PT with Amy and Joyce, Brian said he was still hungry. "Would you like a little snack?" asked Amy. They were headed towards me, and Brian pointed and said, "Martha!", then reached out and we kissed.
(The kissing on the lips was something that we did for quite a while, because it was part of Brian's developmental process. He was still a little boy in his return to us, and the kissing was a normal part of the stage he was in. It made some people uncomfortable, naturally, and we made sure Brian respected their feelings and did not push it - although it sometimes became a game. Other people attempted to shame him into not doing it. Eventually, he grew out of it. )
During lunch, Brian declared today to be "Thankful Day", because he is thankful not to be paralyzed. Brian has his "wipe-off" calendar on the wall next to his bed, and he writes on it when he wakes in the morning.
Brian's incontinence continues, so he is wearing adult diapers. We are all working on getting him to the toilet on time. Otherwise he wears his own clothes.
7:05 pm In Brian's room with Dave and Kate. Brian has been apologizing for being forgetful today.
Marshall, Kellie and Kate had dinner with Brian. Risa and Vanessa visited and drew pistures for Brian. M and K left at 6:30.
In afternoon PT, Brian stood one time 18 minutes and another one 7 minutes.
Brian tried to write "Feel truly thankful today" in his memory Journal.
"I feel so spoiled today."
Brian predicted he would stand for 21 minutes this afternoon; he stood for 25 minutes altogether!
Kate reports that, while looking through Europe photos, Brian remembered the names of people (especially Tracy), and the Eiffel Tower. He also remembers Paris, Justin, and Oliver.
Brian said he woke up this morning "thinking I was in my Emerick Street bed", and when he wasn't, then the day got weird. "I'm going to be very, very weird today you guys." (Emerick being the street he lived on for 13 years)
Brian wants to be called "Beastie Brian the Badass".
Kate left around 9 pm; she will visit for lunch tomorrow, maybe with her mom. Thom Little called; he will be with Brian for Dave and I tomorrow and Sunday morning. I read Brian to sleep by 9:20 pm.
Brian slept well last night!
Brian is still taking amantadine, an antibiotice, dilantin (last dose tonight) and tradnizone.
Thanksgiving 2001
Thursday 22 November 2001
(11/23) (2:20 pm) Brian spent the morning with Marshall, Kellie, and the Gardiners. Dave and I arrived about 1 pm, right after Brian returned to his room after lunch. He was in good spirits all day, with no nap. he did talk some about us "having" a coma, or a heart attack, and we had to reassure him. He gets more distracted in the afternoon, so he also gets more confused. (more tired - still happens when he is tired)
We went for "strolls" around the Unit, and Brian did lie down for a while later. At 4 pm, Kate arrived to visit, before Brian ws resting. We walked her into his room when he was up and he lit up with "Hi Kate!" he was soon ready for a rest, so we all sat in the Waiting Area just outside the Unit. Thom arrived while we were out there, and the Nurse brought Brian out!
Dinner time was 5 pm. Thom, Dave and I got food downstairs and ate with Brian. Kate was going to be going home for her meal, so she didn't eat. She helped Brian eat his meal, though! Helped him with utensils and such. Brian was full of life and humor. Kate was very good for him - a childhood connection. She left after six. Around 7 pm, Max and Matt arrived. The boys went in the room, but Brian wanted to be out in the hall with Thom and Dave, playing ball. They all ended up in the gym, hitting a beachball and another big plastic ball back and forth, and playing 'PIG" with a small plastic ball and floor-standing hoop. They worked on Brian's left hand and arm. The boys were GREAT with Brian.
They wore Brian out by 8 pm; Thom, Max and Matt left, and Dave and I got the Nurse to help Brian to bed. Dave talked to Brian a while about his sleep fears (he'd had trouble sleeping Wednesday night), then I read the first chapter of Through the Looking Glass. Brian was asleep by 9 pm.
Brian remembered all four countries he visited in Europe this summer, with no prompts!!
(11/23) (2:20 pm) Brian spent the morning with Marshall, Kellie, and the Gardiners. Dave and I arrived about 1 pm, right after Brian returned to his room after lunch. He was in good spirits all day, with no nap. he did talk some about us "having" a coma, or a heart attack, and we had to reassure him. He gets more distracted in the afternoon, so he also gets more confused. (more tired - still happens when he is tired)
We went for "strolls" around the Unit, and Brian did lie down for a while later. At 4 pm, Kate arrived to visit, before Brian ws resting. We walked her into his room when he was up and he lit up with "Hi Kate!" he was soon ready for a rest, so we all sat in the Waiting Area just outside the Unit. Thom arrived while we were out there, and the Nurse brought Brian out!
Dinner time was 5 pm. Thom, Dave and I got food downstairs and ate with Brian. Kate was going to be going home for her meal, so she didn't eat. She helped Brian eat his meal, though! Helped him with utensils and such. Brian was full of life and humor. Kate was very good for him - a childhood connection. She left after six. Around 7 pm, Max and Matt arrived. The boys went in the room, but Brian wanted to be out in the hall with Thom and Dave, playing ball. They all ended up in the gym, hitting a beachball and another big plastic ball back and forth, and playing 'PIG" with a small plastic ball and floor-standing hoop. They worked on Brian's left hand and arm. The boys were GREAT with Brian.
They wore Brian out by 8 pm; Thom, Max and Matt left, and Dave and I got the Nurse to help Brian to bed. Dave talked to Brian a while about his sleep fears (he'd had trouble sleeping Wednesday night), then I read the first chapter of Through the Looking Glass. Brian was asleep by 9 pm.
Brian remembered all four countries he visited in Europe this summer, with no prompts!!
Thursday, November 29, 2012
"I'm not in the future or the past"
Wednesday 21 November 2001
11 am "I had a bad dream last night. I dreamt I had no memory." The first thing Brian told us this morning. He said he couldn't remember anything about the dream, it was bad but it didn't wake him up. We told him he could talk about it if he wanted to. He is fixated on the date October 8th; when he wants to know what the date is, he will say it's October, often.
The parents all met to discuss the schedule. Marshall and Kellie want 5-7 and don't want Dave and I around. They say they have "no problem" with Brian's friends visiting at that time (it's prime friend visiting hour). Friends are currently encouraged to visit, mostly on weekends. For tomorrow, which is Thanksgiving, Marshall and Kellie want 9 am to noon. The rest of the time is for therapy, Dave and I, and Brian's quiet time.
Brian had OT, PT, and ST this morning. We will have lunch with him; his NA is working on helping him slow down while eating, and eating one item at a time. Two bites and a sip, also. He did some writing and drawing this morning, too. He seems very alert and happy.
Dave and I will make a quick trip home tonight, after helping Brian to sleep, to get some things to bring down. We also need to make sure he has mellow cds to listen to, cds that are accessible to him.
2:15 pm Brian remembered his Spanish teacher's name with NO PROMPTS, immediately after being asked (Dana Renzi).
During PT, Brian worked on standing up by bending forward, and got up on his hands and knees for the first time.
THE PEG TUBE WAS REMOVED THIS MORNING, with no problems.
During lunch, Brian looked out the window at the rain, commenting on the "unappetizing rain". When he ate, he worked with both hands, but mostly with his left for a change.
Thom Little called and will be with us here for Thanksgiving dinner.
"I'm happy. I'm in the present. I'm not in the future or the past."
7:20 pm Brian unzipped and took off his fleece vest by himself.
Brian repeats in threes: "Um-hm,um-hm, um-hm"; "Yes, yes, yes"; "All right, all right, all right"; "Sorry, sorry, sorry".
Brian had dinner tonight with Marshall, Kellie and Alana. Marc visited, too. While they were here, Brian wheeled himself around the unit.
10:30 pm Dave and I were with Brian from 7 until 10. We played 3-way catch in the hall, and Brian and Dave played catch, with me following and fetching the ball, around the Unit perimeter: Dave walked backwards, with Brian following in the wheelchair. Then we stayed in the room, after a second round, during which Brian kept repeating, "Sorry!" until he finally said, "You guys are getting sick of me saying that, aren't you?" "Sick of what?" "Sorry!" It was as though he was deliberately trying to wear it out. He is feeling responsible for what happened, and we won't let him; we tell him he is not to blame, it's not his fault, he has nothing to feel sorry about.
In the room we talked and goofed, until Brian was ready for bed. Brian put on Dave's vest backwards, and we made jokes about green eggs and ham.
Dave whistled four notes and Brian imitated it PERFECTLY.
When Brian was in bed, I finished Alice in Wonderland. Brian got a bit incoherent and fearful, but calmed down easily. Dave turned out the lights, and I held Brian's hand and talked to him softly, about how I sat with him every day and night in the coma and held his hand and watched him, after he said, "I could watch you all day!" We locked eyes and communicated love for half an hour. I told him about feeling (and dreaming) that I'd re-birthed him. "That makes me feel real good." He told us he was glad he had us, and thanked me for being his mom. "Don't go to sleep," he said once. I told him I would, and he could too, because it was safe.
11 am "I had a bad dream last night. I dreamt I had no memory." The first thing Brian told us this morning. He said he couldn't remember anything about the dream, it was bad but it didn't wake him up. We told him he could talk about it if he wanted to. He is fixated on the date October 8th; when he wants to know what the date is, he will say it's October, often.
The parents all met to discuss the schedule. Marshall and Kellie want 5-7 and don't want Dave and I around. They say they have "no problem" with Brian's friends visiting at that time (it's prime friend visiting hour). Friends are currently encouraged to visit, mostly on weekends. For tomorrow, which is Thanksgiving, Marshall and Kellie want 9 am to noon. The rest of the time is for therapy, Dave and I, and Brian's quiet time.
Brian had OT, PT, and ST this morning. We will have lunch with him; his NA is working on helping him slow down while eating, and eating one item at a time. Two bites and a sip, also. He did some writing and drawing this morning, too. He seems very alert and happy.
Dave and I will make a quick trip home tonight, after helping Brian to sleep, to get some things to bring down. We also need to make sure he has mellow cds to listen to, cds that are accessible to him.
2:15 pm Brian remembered his Spanish teacher's name with NO PROMPTS, immediately after being asked (Dana Renzi).
During PT, Brian worked on standing up by bending forward, and got up on his hands and knees for the first time.
THE PEG TUBE WAS REMOVED THIS MORNING, with no problems.
During lunch, Brian looked out the window at the rain, commenting on the "unappetizing rain". When he ate, he worked with both hands, but mostly with his left for a change.
Thom Little called and will be with us here for Thanksgiving dinner.
"I'm happy. I'm in the present. I'm not in the future or the past."
7:20 pm Brian unzipped and took off his fleece vest by himself.
Brian repeats in threes: "Um-hm,um-hm, um-hm"; "Yes, yes, yes"; "All right, all right, all right"; "Sorry, sorry, sorry".
Brian had dinner tonight with Marshall, Kellie and Alana. Marc visited, too. While they were here, Brian wheeled himself around the unit.
10:30 pm Dave and I were with Brian from 7 until 10. We played 3-way catch in the hall, and Brian and Dave played catch, with me following and fetching the ball, around the Unit perimeter: Dave walked backwards, with Brian following in the wheelchair. Then we stayed in the room, after a second round, during which Brian kept repeating, "Sorry!" until he finally said, "You guys are getting sick of me saying that, aren't you?" "Sick of what?" "Sorry!" It was as though he was deliberately trying to wear it out. He is feeling responsible for what happened, and we won't let him; we tell him he is not to blame, it's not his fault, he has nothing to feel sorry about.
In the room we talked and goofed, until Brian was ready for bed. Brian put on Dave's vest backwards, and we made jokes about green eggs and ham.
Dave whistled four notes and Brian imitated it PERFECTLY.
When Brian was in bed, I finished Alice in Wonderland. Brian got a bit incoherent and fearful, but calmed down easily. Dave turned out the lights, and I held Brian's hand and talked to him softly, about how I sat with him every day and night in the coma and held his hand and watched him, after he said, "I could watch you all day!" We locked eyes and communicated love for half an hour. I told him about feeling (and dreaming) that I'd re-birthed him. "That makes me feel real good." He told us he was glad he had us, and thanked me for being his mom. "Don't go to sleep," he said once. I told him I would, and he could too, because it was safe.
A "Healing, Recreational Day"
Tuesday 20 November 2001
7 pm Brian has had a busy first day in Re-hab. Dave and I arrived before 8 am, for breakfast. Brian was sitting up on his bed, writing on his calendar! He had a shower, then met us in the dining area for breakfast. He did most of his showering himself, and styled his hair with gel. His breakfast was late, and Dave gave him some bran muffin. At one point, even though Brian had his own breakfast, he swiped the last bite of Dave's sweet roll!
Dave helped Brian do his menus through Thursday, while I met with Janet Murphy. Brian wet himself all the way through, because he and Dave were both so busy.
Dave left for a couple hours to do laundry, while I stayed with Brian. He slept through his second morning PT, for about 45 minutes. All the staff are welcoming of our involvement in Brian's therapy. We can do as little or as much as we want or they need. For these first few days, they WANT us here to help Brian with the transition, and aid in their assessments of him. Dave helped with PT this morning, and we were both in the room for this afternoon's OT assessment. Brian is exhibiting apraxia, which is a condition in which the signals from his brain to his muscles and limbs don't connect properly. He can KNOW what to do, but can't get his body to do it. It causes his hands and arms to be busy a lot, his legs to squirm when he concentrates. It causes him to fixate on one eating utensil and maybe use it improperly (fork for soup we have seen several times). His left side is also "weaker" than his right - not muscularly, but in terms of the signals it receives and processes.
Brian called Dave "Marshall" at least twice today. I am "Mom". When PT Amy came in with her hair pulled back, Brian called her "Kate". She DOES look like Kate Lewis!
Brian is wearing "Depends" for his incontinence until it gets taken care of - until he gets re-trained. He had another accident this afternoon.
When Brian started getting overloaded this afternoon, around 3 pm, he began to obsess over other people having heart attacks and comas, warning us that they might happen on October 8th, 9th, or 10th. This continued into dinner, except for half an hour or so when I read to him, between 4 and 5. It scared Alana. He was almost frantic about it, apologizing to us about the possibility of it happening. It also seemed like play-acting, like a little kid transferring a bad experience onto others in order to deal with it. And WE were given warnings, unlike Brian. He also warned us about having a hysterectomy (I had spoken of mine) and of choking on food. He told me, after Alana left with Dave at 5:30, that he saved Dave's life by warning him not to choke on chocolate milk. Alana had been helping Brian eat more slowly and carefully.
(In retrospect, it does seem like this was a coping behavior, and connected to his fear of being alone and falling asleep. As Brian's awareness of what happened became clearer, he became fearful of it happening again.)
I finally got Brian completely away from the subject(s) when Marc Likens came to visit around 6 pm. We started talking about books.
Dave, Marc and Brian have been playing three-way catch in the hall for half an hour, giggling merrily (it's 7:25). Brian is a clown, I guess!
Spam visited while Brian had lunch, and Alana was here from 4:30-5:30.
Brian's voice is almost normal, slightly breathy. It sounds great.
Marshall and Kellie have not been here all day.
Brian is working on remembering that he is a senior.
Dr. Solomon contacted Dr. Foster to have Brian taken off one heart med, kevlan, because it is lowering his blood pressure and might be causing drowsiness. So he is only on the lopressor, which is like his atenolol.
Brian is apologizing a lot whenever he does ANYTHING that might be perceived as wrong, inconvenient or unpleasant. We are working on helping him to realize he does NOT have to apologize - especially for ANYTHING related to his coma. Yesterday he became frustrated at not being able to get on the commode by himself; his frustration level has been surprisingly high and that was the first time I really saw him angry. (although, as a child, he had a bad temper)
The atmosphere here is much more relaxed and congenial than in ICU. Very professional as well.
Brian's schedule for tomorrow is up and looks full, with rests scheduled, too. Parents are scheduled for an 8 am meeting with the social workers, Janet Murphy and Shelly Simpson. We don't know for sure if Kellie and Marshall are actually going to show. We will discuss plans for Brian's care here and in the future. NO VENTING OR DISCUSSION OF PAST "TRANSGRESSIONS". "You're on the team or you're out", as Shelly put it to me yesterday.
8:30 pm Marc played Chopin's "Nocturnes" on the piano in the dining room. Brian sat transfixed and said, "I can listen to this all day." (It was gorgeous; Marc is a talented pianist and it was so sweet of him to sit down and play. Brian used to listen to a cd of that piece after this)
When "the boys" were playing catch, the ball hit Brian's head and he said, "Oh, I have a head injury!", faking it, acting up.
Brian and I were talking, Brian lying in bed, me in the chair stroking his forehead, and he commented that I needed to brush my teeth. He said I should smile, brush my teeth, "and obey me!"
"I just feel good, knowing you guys were there." (about us in his room)
"I had another healing, recreational day."
The PEG tube is coming out tomorrow morning! It will happen around breakfast, so his breakfast will be delayed. It will be slightly painful, so they will give him some Tylenol. We told him, so it wouldn't be a surprise.
10:15 pm We stayed until 9:30 pm. I read a chapter and a half of Alice, until Brian fell fast asleep at 9:15. We covered him, put up the safety bars, and turned out the light. Merrill Lynn sat with us and visited before we started reading. She is very sweet with Brian, And Bryan is a big teddy bear.
7 pm Brian has had a busy first day in Re-hab. Dave and I arrived before 8 am, for breakfast. Brian was sitting up on his bed, writing on his calendar! He had a shower, then met us in the dining area for breakfast. He did most of his showering himself, and styled his hair with gel. His breakfast was late, and Dave gave him some bran muffin. At one point, even though Brian had his own breakfast, he swiped the last bite of Dave's sweet roll!
Dave helped Brian do his menus through Thursday, while I met with Janet Murphy. Brian wet himself all the way through, because he and Dave were both so busy.
Dave left for a couple hours to do laundry, while I stayed with Brian. He slept through his second morning PT, for about 45 minutes. All the staff are welcoming of our involvement in Brian's therapy. We can do as little or as much as we want or they need. For these first few days, they WANT us here to help Brian with the transition, and aid in their assessments of him. Dave helped with PT this morning, and we were both in the room for this afternoon's OT assessment. Brian is exhibiting apraxia, which is a condition in which the signals from his brain to his muscles and limbs don't connect properly. He can KNOW what to do, but can't get his body to do it. It causes his hands and arms to be busy a lot, his legs to squirm when he concentrates. It causes him to fixate on one eating utensil and maybe use it improperly (fork for soup we have seen several times). His left side is also "weaker" than his right - not muscularly, but in terms of the signals it receives and processes.
Brian called Dave "Marshall" at least twice today. I am "Mom". When PT Amy came in with her hair pulled back, Brian called her "Kate". She DOES look like Kate Lewis!
Brian is wearing "Depends" for his incontinence until it gets taken care of - until he gets re-trained. He had another accident this afternoon.
When Brian started getting overloaded this afternoon, around 3 pm, he began to obsess over other people having heart attacks and comas, warning us that they might happen on October 8th, 9th, or 10th. This continued into dinner, except for half an hour or so when I read to him, between 4 and 5. It scared Alana. He was almost frantic about it, apologizing to us about the possibility of it happening. It also seemed like play-acting, like a little kid transferring a bad experience onto others in order to deal with it. And WE were given warnings, unlike Brian. He also warned us about having a hysterectomy (I had spoken of mine) and of choking on food. He told me, after Alana left with Dave at 5:30, that he saved Dave's life by warning him not to choke on chocolate milk. Alana had been helping Brian eat more slowly and carefully.
(In retrospect, it does seem like this was a coping behavior, and connected to his fear of being alone and falling asleep. As Brian's awareness of what happened became clearer, he became fearful of it happening again.)
I finally got Brian completely away from the subject(s) when Marc Likens came to visit around 6 pm. We started talking about books.
Dave, Marc and Brian have been playing three-way catch in the hall for half an hour, giggling merrily (it's 7:25). Brian is a clown, I guess!
Spam visited while Brian had lunch, and Alana was here from 4:30-5:30.
Brian's voice is almost normal, slightly breathy. It sounds great.
Marshall and Kellie have not been here all day.
Brian is working on remembering that he is a senior.
Dr. Solomon contacted Dr. Foster to have Brian taken off one heart med, kevlan, because it is lowering his blood pressure and might be causing drowsiness. So he is only on the lopressor, which is like his atenolol.
Brian is apologizing a lot whenever he does ANYTHING that might be perceived as wrong, inconvenient or unpleasant. We are working on helping him to realize he does NOT have to apologize - especially for ANYTHING related to his coma. Yesterday he became frustrated at not being able to get on the commode by himself; his frustration level has been surprisingly high and that was the first time I really saw him angry. (although, as a child, he had a bad temper)
The atmosphere here is much more relaxed and congenial than in ICU. Very professional as well.
Brian's schedule for tomorrow is up and looks full, with rests scheduled, too. Parents are scheduled for an 8 am meeting with the social workers, Janet Murphy and Shelly Simpson. We don't know for sure if Kellie and Marshall are actually going to show. We will discuss plans for Brian's care here and in the future. NO VENTING OR DISCUSSION OF PAST "TRANSGRESSIONS". "You're on the team or you're out", as Shelly put it to me yesterday.
8:30 pm Marc played Chopin's "Nocturnes" on the piano in the dining room. Brian sat transfixed and said, "I can listen to this all day." (It was gorgeous; Marc is a talented pianist and it was so sweet of him to sit down and play. Brian used to listen to a cd of that piece after this)
When "the boys" were playing catch, the ball hit Brian's head and he said, "Oh, I have a head injury!", faking it, acting up.
Brian and I were talking, Brian lying in bed, me in the chair stroking his forehead, and he commented that I needed to brush my teeth. He said I should smile, brush my teeth, "and obey me!"
"I just feel good, knowing you guys were there." (about us in his room)
"I had another healing, recreational day."
The PEG tube is coming out tomorrow morning! It will happen around breakfast, so his breakfast will be delayed. It will be slightly painful, so they will give him some Tylenol. We told him, so it wouldn't be a surprise.
10:15 pm We stayed until 9:30 pm. I read a chapter and a half of Alice, until Brian fell fast asleep at 9:15. We covered him, put up the safety bars, and turned out the light. Merrill Lynn sat with us and visited before we started reading. She is very sweet with Brian, And Bryan is a big teddy bear.
Tuesday, November 27, 2012
The Move to Dancing and Remembering School
Monday 19 November 2001
9:10 am Just spoke with D. Martin: the ICD is fine, all cultures were negative, and discussion is occurring regarding availability of a bed at Providence today or tomorrow (Marshall is with Brian).
10:40 am BRIAN IS GETTING OUT TODAY!! Dave and I packed up all his stuff from his room. Right now Brian is in the gym with PT David, working on standing. Brian sat up on the edge of his bed BY HIMSELF in order to get into the wheelchair. He also wheeled himself down the hall: "I'm moving!", very excited. He definitely pulls harder with his right hand, veering to the left.
When I took down the card from his Spanish class, Brian wanted to look at it. He sat and read it for some time; he was able to read the Spanish!
10:50 am BRIAN WALKED!!PT David brought him back and they stopped here. "Hey Mom! I walked!" He stood up on his own with the parallel bars, and walked their length four times! Then in his room, Brian stood up with the aid of a walker, standing straight and tall! David thinks he'll be walking with the walker in a day or two. Says Brian, "I stood up! That's a good thing!" David told Brian he has worked with people for many years and has never seen anyone work so fast.
I talked to Janet Murphy,he social worker at Providence. We will connect when I go there with Brian today.
I called the high school and spoke to the receptionist. She will pass the good word, and have Pete Cislo (a Vice Principal) make an announcement. I also left messages for Alana and Thom at their homes.
(11/20) (10:50 am) Brian and I rode over to Providence at 1:30 pm. Penny made sure he had lunch beforehand, and gave him a big kiss and hug. She said something very sweet to him about how hard she knows he will work, and how sweet he is, and he said, "You sound like my mom!" Brian rode in a wheelchair in the mobile van, and I sat with him. We talked all the way about how long he'd been in the coma.
(Typing this brings tears. We became fond of Penny and the others. They were the medical family that helped us bring Brian back to life. We all grew very close in a short time. I will always be grateful to them for their compassion, dedication, humor, patience, and kindness to my son. It was a most amazing time and place for us all.)
Marshall was in the room when we got here. Brian is in Room 3006, once again near the Nurse's station (and on the 3rd floor). He doesn't have a great view like he did in Room 12 in the ICU, but he CAN see the mountains, and last night the bright crescent moon was shining.
Marshall unpacked clothes and he and I did some paperwork. Brian didn't want to get in bed, but Steve, the Mobile Care driver, needed to take his wheelchair. Nurse Stephanie helped Brian get into bed, examined him, asked some questions. Brian was very alert and interested in everything. When Dave arrived shortly, he brought up Brian's posters and things, and we began decorating the room. He has art supplies, photo albums, writing, and his calendar, as well as some art work of his own, in his room.
Merrill Lynn White was the charge nurse in the evening. Marshall and I both know her from years ago, early 1980s.
Brian's swing shift nurse was Bryan; he is actually a Certified Nursing Assistant. Everyone is very friendly and helpful. They encourage the presence of family. Brian's Physical Therapist is Amy. She got Brian into his wheelchair and he wheeled himself around the unit, with her help and Dave and I in attendance. Brian used his feet for most of the propulsion, which is great for his legs AND feet. (He did this for quite a while, and could really get some speed going after some practice. It was fun to accompany him zipping around the unit in circles!)
Brian saw the phone and wanted to call people immediately. The phone was removed temporarily, as per policy. The tv is covered with a blanket. Marshall stayed until 5:30, while Dave and I went downstairs to eat dinner. Brian ate dinner at a table in the dining room here on the unit, with Marshall. They also started working on a Visitor List, which Dave, Brian, and I finished after Marshall left.
Dave and I stayed with Brian all evening, except for an hour when we left him with Alana. Alana reported later that she and Brian talked about their relationship: Brian expressed his amazement that she was still with him: "You didn't expect this when you started going out with me." (Alana was a remarkable young woman of 15 at the time).
Brian is still working on using the toilet, and was embarrassed after dinner because "I shit my pants." I told him it was okay, accidents were going to happen, and I would try to help prevent them. I reminded him he can tell us when he needs to go, and that I'm his mom and I changed his diapers. He thought it was sweet of me to want to help. "I love you so much," he told me.
Brian gave Marshall a big, spontaneous hug in the hallway, while Brian was in the wheelchair. Brian was very attached to his animals tonight: Xena the giraffe/pony, and Josie puppy.
I met briefly with Janet and Shelly, the social workers, this afternoon.
Brian's schedule for Tuesday was already on the bulletin borad across from the Nurse's Station, and in his room. He was scheduled for a morning shower and sessions with the physical and occupational therapists.
Brian is no longer attached to a heart monitor, or any other monitors. he does not have a PICC line anymore, either (all this ended today).
Brian has been expressing fears of falling asleep because he is afraid of falling into another coma. he looked a little scared when i was reading to him, then calmed down and fell asleep - after asking me to stop reading. It was about 9:15. Dave and I stayed until nearly ten.
Brian was alert and happy throughout his first afternoon and evening at Dancing and Remembering School. This surprised the nurses, who are used to some disorientation, and more fatigue.
Thus began Brian's next phase of recovery. An auspicious beginning to a busy time of hard work.
9:10 am Just spoke with D. Martin: the ICD is fine, all cultures were negative, and discussion is occurring regarding availability of a bed at Providence today or tomorrow (Marshall is with Brian).
10:40 am BRIAN IS GETTING OUT TODAY!! Dave and I packed up all his stuff from his room. Right now Brian is in the gym with PT David, working on standing. Brian sat up on the edge of his bed BY HIMSELF in order to get into the wheelchair. He also wheeled himself down the hall: "I'm moving!", very excited. He definitely pulls harder with his right hand, veering to the left.
When I took down the card from his Spanish class, Brian wanted to look at it. He sat and read it for some time; he was able to read the Spanish!
10:50 am BRIAN WALKED!!PT David brought him back and they stopped here. "Hey Mom! I walked!" He stood up on his own with the parallel bars, and walked their length four times! Then in his room, Brian stood up with the aid of a walker, standing straight and tall! David thinks he'll be walking with the walker in a day or two. Says Brian, "I stood up! That's a good thing!" David told Brian he has worked with people for many years and has never seen anyone work so fast.
I talked to Janet Murphy,he social worker at Providence. We will connect when I go there with Brian today.
I called the high school and spoke to the receptionist. She will pass the good word, and have Pete Cislo (a Vice Principal) make an announcement. I also left messages for Alana and Thom at their homes.
(11/20) (10:50 am) Brian and I rode over to Providence at 1:30 pm. Penny made sure he had lunch beforehand, and gave him a big kiss and hug. She said something very sweet to him about how hard she knows he will work, and how sweet he is, and he said, "You sound like my mom!" Brian rode in a wheelchair in the mobile van, and I sat with him. We talked all the way about how long he'd been in the coma.
(Typing this brings tears. We became fond of Penny and the others. They were the medical family that helped us bring Brian back to life. We all grew very close in a short time. I will always be grateful to them for their compassion, dedication, humor, patience, and kindness to my son. It was a most amazing time and place for us all.)
Marshall was in the room when we got here. Brian is in Room 3006, once again near the Nurse's station (and on the 3rd floor). He doesn't have a great view like he did in Room 12 in the ICU, but he CAN see the mountains, and last night the bright crescent moon was shining.
Marshall unpacked clothes and he and I did some paperwork. Brian didn't want to get in bed, but Steve, the Mobile Care driver, needed to take his wheelchair. Nurse Stephanie helped Brian get into bed, examined him, asked some questions. Brian was very alert and interested in everything. When Dave arrived shortly, he brought up Brian's posters and things, and we began decorating the room. He has art supplies, photo albums, writing, and his calendar, as well as some art work of his own, in his room.
Merrill Lynn White was the charge nurse in the evening. Marshall and I both know her from years ago, early 1980s.
Brian's swing shift nurse was Bryan; he is actually a Certified Nursing Assistant. Everyone is very friendly and helpful. They encourage the presence of family. Brian's Physical Therapist is Amy. She got Brian into his wheelchair and he wheeled himself around the unit, with her help and Dave and I in attendance. Brian used his feet for most of the propulsion, which is great for his legs AND feet. (He did this for quite a while, and could really get some speed going after some practice. It was fun to accompany him zipping around the unit in circles!)
Brian saw the phone and wanted to call people immediately. The phone was removed temporarily, as per policy. The tv is covered with a blanket. Marshall stayed until 5:30, while Dave and I went downstairs to eat dinner. Brian ate dinner at a table in the dining room here on the unit, with Marshall. They also started working on a Visitor List, which Dave, Brian, and I finished after Marshall left.
Dave and I stayed with Brian all evening, except for an hour when we left him with Alana. Alana reported later that she and Brian talked about their relationship: Brian expressed his amazement that she was still with him: "You didn't expect this when you started going out with me." (Alana was a remarkable young woman of 15 at the time).
Brian is still working on using the toilet, and was embarrassed after dinner because "I shit my pants." I told him it was okay, accidents were going to happen, and I would try to help prevent them. I reminded him he can tell us when he needs to go, and that I'm his mom and I changed his diapers. He thought it was sweet of me to want to help. "I love you so much," he told me.
Brian gave Marshall a big, spontaneous hug in the hallway, while Brian was in the wheelchair. Brian was very attached to his animals tonight: Xena the giraffe/pony, and Josie puppy.
I met briefly with Janet and Shelly, the social workers, this afternoon.
Brian's schedule for Tuesday was already on the bulletin borad across from the Nurse's Station, and in his room. He was scheduled for a morning shower and sessions with the physical and occupational therapists.
Brian is no longer attached to a heart monitor, or any other monitors. he does not have a PICC line anymore, either (all this ended today).
Brian has been expressing fears of falling asleep because he is afraid of falling into another coma. he looked a little scared when i was reading to him, then calmed down and fell asleep - after asking me to stop reading. It was about 9:15. Dave and I stayed until nearly ten.
Brian was alert and happy throughout his first afternoon and evening at Dancing and Remembering School. This surprised the nurses, who are used to some disorientation, and more fatigue.
Thus began Brian's next phase of recovery. An auspicious beginning to a busy time of hard work.
Monday, November 26, 2012
A Box of Cranes
Sunday 18 November 2001
10;20 am Thom called at 9:15. he had been with Brian since 7 am. Brain was afraid to fall asleep last night, afraid of dreaming.
Brian is convinced he has missed his junior AND enior years of high school. "Damn! I still have to do my junior and senior year!"
This morning Brian and Thom played "Hangman" with the word "coma". They also did some writing, with Thom drawing the initial line and Brian completing the letter. They wrote sentences: "I went into a coma on October 8th", "I will graduate in 2002." The latter is dangerous: Dave and I are trying to stay away from expectations around graduating, so that Brian is not set up for frustration and disappointment. But it was a sentence Brian wanted to write, apparently.
Another activity with Thom this morning:drawing geometric figures. They drew a parallelogram, pentagon, star, octagon, triangle, circle. Brian said, "How about a trapezoid?" and Thom didn't know what it was. "I don't either," said Brian. Thom said they wrote 4-5 pages this morning.
(11-19) (7:50 am) Brian's writing looks like his printing from kindergarten - big, block, capital letters.
From Thom's Notes:
10:50 am Just did physical therapy - down to the gym! On 2nd floor - parallel bars - trying to stand - almost all the way up - worked hard w/Valerie and Janet -
"How long until I walk again?"
"I don't know. Maybe some months. Is that ok?"
"Yeah......It's exciting."
I went in to see Brian a little after one. he was very happy to see me, hug and kiss on the lips. Wanted to know where I'd been.
Dave came in around 2 pm, while Brian was eating his big lunch. Brian eventually ate every bite! He used his left hand more than he has been, to help hold his turkey sandwich, to pick up pieces of fruit that fell from his bowl. He had a little round pepper and i didn't know what it was. "Jalapeno pepper!" as it went into his mouth.
Brian immediately started talking about missing school, missing a year, and graduating in 2002. This conversation continued throughout the visit. I (and we, when Dave arrived) assured Brian that he had NOT missed junior year and had, in fact, been a top student. He wanted to see pictures from junior year so we found those in his albums. He is fixated on graduating in 2002, and we are trying to assure him that he WILL graduate, but we don't know when, and it's nothing to worry about right now. Plus, he won't have much to do in order to complete his studies. Dave calls Re-hab "Dancing and Remembering School", to help Brian understand that it will be LIKE school, with hard work and a schedule.
We did a lot of work on length of time he's been in the hospital: separating the concepts of years, months and weeks; re-assuring him that he has not been here for a year, as he continues to think. ("It feels like I've been here a year!") He is VERY glad it's only been six weeks ("That's a relief!")
Every time Brian asked what day it was, we referred him to his "calendar helper" on the wall. He figured out it was Sunday, November 18th. He had trouble with the year, thinking first it was 2003 (he at first thought he'd lost two years), then 2002. This seems to have been a way to compensate for feeling he lost a year or two.
We looked at lots of photos of Homecoming, cousins, friends, family. He did great with remembering people, except when he got really excited, when he would hurry and make mistakes. He thought we lived in Washington; we told him Jesse and Jamie do, and asked what city. "Tacoma?" "Close!" "Seattle?" "Yes!" Then, with prompts, ("starts with O." "Ohio?") he got "Oregon". He also guessed, without help, that cousins (2nd cousins) Andrew and Georag live in Nevada.
Jesse and Jamie's friend Mary Snyder, and her mother, Becky Peters, sent me a shoebox full of origami cranes, with a card addressed to "Brian and family". I brought the box and unopened card to Brian. He opened the box and said, "A box full of cranes!", then opened the envelope and read the handwritten (cursive!) message inside, out loud, perfectly.
(I still have those cranes. They are on the headboard of our bed. Now I think of Becky, who has cancer and is very ill. Perhaps she needs some cranes of her own.)
When Marshall arrived at 4:45, Dave and I were to leave. Brian didn't want us to leave: "Keep me company until he comes." I opened the door and curtains and assured Brian that Marshall would be coming through the door straight down the hall. Brian was reluctant but let us go.
We returned at 7:30. I went in with Max Jacobson-Fried, who arrived right after us (we were waiting for Nurse Wednesday to finish up something with Brian) and found Alana already there. I left the two of them with a happy Brian. Ahsa, Jessica Erickson, Brad, and Jessica Daly came, and when Max took Alana home, Dave and I got the other four in to visit in twos: Brad and Jessica D. Ahsa and Jessica E. The kids want to set up a mini-concert for Brian (Brad and Jessica D are in choir; Brad was in Chamber Choir with Brian). They also asked about Brian's t-shirt design for the senior class t-shirt. We directed them to Alana and Mark Schoenleber.
At 9:15, Dave and I went in. Brian felt good and happy. Nurse Wednesday gave him meds and we helped settle him down, choose tomorrow's menu. I read a chapter of Alice in Wonderland; he was asleep by two pages in.
We're still looking at Monday for discharge to Providence.
Marshall is behaving aggressively and not speaking to Dave and I. The people here apparently think Marshall is Brian's legal guardian. Not true: we have 50/50 custody.
Brian got a shower thanks to Thom! And Marshall and Kellie snuck in Laurie, up the fire escape! (Their Australian Shepherd/Border Collie mix, family pet, Jesse's originally)
10;20 am Thom called at 9:15. he had been with Brian since 7 am. Brain was afraid to fall asleep last night, afraid of dreaming.
Brian is convinced he has missed his junior AND enior years of high school. "Damn! I still have to do my junior and senior year!"
This morning Brian and Thom played "Hangman" with the word "coma". They also did some writing, with Thom drawing the initial line and Brian completing the letter. They wrote sentences: "I went into a coma on October 8th", "I will graduate in 2002." The latter is dangerous: Dave and I are trying to stay away from expectations around graduating, so that Brian is not set up for frustration and disappointment. But it was a sentence Brian wanted to write, apparently.
Another activity with Thom this morning:drawing geometric figures. They drew a parallelogram, pentagon, star, octagon, triangle, circle. Brian said, "How about a trapezoid?" and Thom didn't know what it was. "I don't either," said Brian. Thom said they wrote 4-5 pages this morning.
(11-19) (7:50 am) Brian's writing looks like his printing from kindergarten - big, block, capital letters.
From Thom's Notes:
10:50 am Just did physical therapy - down to the gym! On 2nd floor - parallel bars - trying to stand - almost all the way up - worked hard w/Valerie and Janet -
"How long until I walk again?"
"I don't know. Maybe some months. Is that ok?"
"Yeah......It's exciting."
I went in to see Brian a little after one. he was very happy to see me, hug and kiss on the lips. Wanted to know where I'd been.
Dave came in around 2 pm, while Brian was eating his big lunch. Brian eventually ate every bite! He used his left hand more than he has been, to help hold his turkey sandwich, to pick up pieces of fruit that fell from his bowl. He had a little round pepper and i didn't know what it was. "Jalapeno pepper!" as it went into his mouth.
Brian immediately started talking about missing school, missing a year, and graduating in 2002. This conversation continued throughout the visit. I (and we, when Dave arrived) assured Brian that he had NOT missed junior year and had, in fact, been a top student. He wanted to see pictures from junior year so we found those in his albums. He is fixated on graduating in 2002, and we are trying to assure him that he WILL graduate, but we don't know when, and it's nothing to worry about right now. Plus, he won't have much to do in order to complete his studies. Dave calls Re-hab "Dancing and Remembering School", to help Brian understand that it will be LIKE school, with hard work and a schedule.
We did a lot of work on length of time he's been in the hospital: separating the concepts of years, months and weeks; re-assuring him that he has not been here for a year, as he continues to think. ("It feels like I've been here a year!") He is VERY glad it's only been six weeks ("That's a relief!")
Every time Brian asked what day it was, we referred him to his "calendar helper" on the wall. He figured out it was Sunday, November 18th. He had trouble with the year, thinking first it was 2003 (he at first thought he'd lost two years), then 2002. This seems to have been a way to compensate for feeling he lost a year or two.
We looked at lots of photos of Homecoming, cousins, friends, family. He did great with remembering people, except when he got really excited, when he would hurry and make mistakes. He thought we lived in Washington; we told him Jesse and Jamie do, and asked what city. "Tacoma?" "Close!" "Seattle?" "Yes!" Then, with prompts, ("starts with O." "Ohio?") he got "Oregon". He also guessed, without help, that cousins (2nd cousins) Andrew and Georag live in Nevada.
Jesse and Jamie's friend Mary Snyder, and her mother, Becky Peters, sent me a shoebox full of origami cranes, with a card addressed to "Brian and family". I brought the box and unopened card to Brian. He opened the box and said, "A box full of cranes!", then opened the envelope and read the handwritten (cursive!) message inside, out loud, perfectly.
(I still have those cranes. They are on the headboard of our bed. Now I think of Becky, who has cancer and is very ill. Perhaps she needs some cranes of her own.)
When Marshall arrived at 4:45, Dave and I were to leave. Brian didn't want us to leave: "Keep me company until he comes." I opened the door and curtains and assured Brian that Marshall would be coming through the door straight down the hall. Brian was reluctant but let us go.
We returned at 7:30. I went in with Max Jacobson-Fried, who arrived right after us (we were waiting for Nurse Wednesday to finish up something with Brian) and found Alana already there. I left the two of them with a happy Brian. Ahsa, Jessica Erickson, Brad, and Jessica Daly came, and when Max took Alana home, Dave and I got the other four in to visit in twos: Brad and Jessica D. Ahsa and Jessica E. The kids want to set up a mini-concert for Brian (Brad and Jessica D are in choir; Brad was in Chamber Choir with Brian). They also asked about Brian's t-shirt design for the senior class t-shirt. We directed them to Alana and Mark Schoenleber.
At 9:15, Dave and I went in. Brian felt good and happy. Nurse Wednesday gave him meds and we helped settle him down, choose tomorrow's menu. I read a chapter of Alice in Wonderland; he was asleep by two pages in.
We're still looking at Monday for discharge to Providence.
Marshall is behaving aggressively and not speaking to Dave and I. The people here apparently think Marshall is Brian's legal guardian. Not true: we have 50/50 custody.
Brian got a shower thanks to Thom! And Marshall and Kellie snuck in Laurie, up the fire escape! (Their Australian Shepherd/Border Collie mix, family pet, Jesse's originally)
Wednesday, November 21, 2012
A Day with Friend Thom
Saturday 17 November 2001
6:29 pm Dave and I visited Brian from 6 to 7:30 this morning, before we came home. He slept pretty well but awoke at 4-4:30 am again, so he was sitting up awake in his room, with the lights out, when we came in. We were greeted with a big grin. We spent much of the time talking about how long he'd been in the coma and all the benchmarks that occurred over the last six weeks. I have certain dates circled, and we went over and over what happened and when. Brian's short term memory is not functioning well, so multiple repetitions are necessary - and he still forgets. His concept of time is also impaired (the passage of time). But he asks a lot of questions, wants to be "forward and truthful". We told him we would be gone today and tonight, but back tomorrow. He didn't want us gone, but said also, "I'm fine without you." When I said I need breakfast, he responded, "Go get comfortable!" He kissed my lips and hand, and Dave's lips, when we left.
(Although the short term memorty has improved somewhat, depending on the items to remember and the repetitions, it will never be normal and Brian still has no concept of the passage of time.)
Thom called with a report of the day. He got to spend time with Brian this morning. They played catch, looked at the cards and 8 x 10 prototypes from Eric, and Thom got to stay for PT. During the PT session, the therapist tried to get Brian to stand but he wasn't very interested.
When Brian looks at the card and 8 x 10, it's new each time and he gets very excited. Thom put the 8 x 10 on the wall and was talking about how this could be the beginning of Brian's art career. Brian burst out, "Thank you, heart attack!"
When it was rest time, from 11 to 1, Brian argued a bit, but Thom had to leave.
At 1 pm, Alana and Marc went in. Thom showed at 2 pm, and Matt was in the Waiting Room. Thom called in, Nurse Tom said folks could go in, so Marc came out and got Matt. Then Max Young and his dad came, and went in to see Brian (Max's dad wanted to meet Brian). Max, Alana, Matt and Marc stayed until after 4, when Thom went in and the others left. Marc and Thom worked on some calendar/memory stuff with Brian, until Marshall arrived after 5 pm. Brian was also drawing on his shorts. When Thom left, Brian was "really happy".
Dave and Brian this morning:
D: "Who's the president?"
B: "Clinton"
D: "That WAS the president. We have a new one we made fun of."
B: "Bush!"
11/18 10:18 am Thom reported that Marshall arrived last evening at 5:30. Last night, Nurse Tom allowed Marc, Vanessa and Ahsa to visit till 9:15, when Thom had them leave. Brian protested: "I'm not tired!", but 1 1/2 pages into Alice in Wonderland, he was asleep.
6:29 pm Dave and I visited Brian from 6 to 7:30 this morning, before we came home. He slept pretty well but awoke at 4-4:30 am again, so he was sitting up awake in his room, with the lights out, when we came in. We were greeted with a big grin. We spent much of the time talking about how long he'd been in the coma and all the benchmarks that occurred over the last six weeks. I have certain dates circled, and we went over and over what happened and when. Brian's short term memory is not functioning well, so multiple repetitions are necessary - and he still forgets. His concept of time is also impaired (the passage of time). But he asks a lot of questions, wants to be "forward and truthful". We told him we would be gone today and tonight, but back tomorrow. He didn't want us gone, but said also, "I'm fine without you." When I said I need breakfast, he responded, "Go get comfortable!" He kissed my lips and hand, and Dave's lips, when we left.
(Although the short term memorty has improved somewhat, depending on the items to remember and the repetitions, it will never be normal and Brian still has no concept of the passage of time.)
Thom called with a report of the day. He got to spend time with Brian this morning. They played catch, looked at the cards and 8 x 10 prototypes from Eric, and Thom got to stay for PT. During the PT session, the therapist tried to get Brian to stand but he wasn't very interested.
When Brian looks at the card and 8 x 10, it's new each time and he gets very excited. Thom put the 8 x 10 on the wall and was talking about how this could be the beginning of Brian's art career. Brian burst out, "Thank you, heart attack!"
When it was rest time, from 11 to 1, Brian argued a bit, but Thom had to leave.
At 1 pm, Alana and Marc went in. Thom showed at 2 pm, and Matt was in the Waiting Room. Thom called in, Nurse Tom said folks could go in, so Marc came out and got Matt. Then Max Young and his dad came, and went in to see Brian (Max's dad wanted to meet Brian). Max, Alana, Matt and Marc stayed until after 4, when Thom went in and the others left. Marc and Thom worked on some calendar/memory stuff with Brian, until Marshall arrived after 5 pm. Brian was also drawing on his shorts. When Thom left, Brian was "really happy".
Dave and Brian this morning:
D: "Who's the president?"
B: "Clinton"
D: "That WAS the president. We have a new one we made fun of."
B: "Bush!"
11/18 10:18 am Thom reported that Marshall arrived last evening at 5:30. Last night, Nurse Tom allowed Marc, Vanessa and Ahsa to visit till 9:15, when Thom had them leave. Brian protested: "I'm not tired!", but 1 1/2 pages into Alice in Wonderland, he was asleep.
Tuesday, November 20, 2012
"I'm Alive, Well and Awake!"
Friday 16 November 2001
12;20 pm BRIAN WENT FOR A RIDE IN A WHEELCHAIR THIS MORNING. Marshall and Kellie were with him, so Dave and I did not go along, but we were in the Waiting Room when Brian was wheeled down the hall. Brian saw us and broke into a HUGE grin. We walked up to him and he reached to each of us in turn, taking a hand and giving us kisses on our lips.
(Although Brian had been out in the Cadillac Chair, this was his first outing in a regular wheelchair)
Dr. Foster is certain the infection is localized and the blood that was expelled was old. He and Dr. Martin saw Brian this morning. If this is true, Brian could move to Providence on Monday or Tuesday.
Dr. Foster also told Dave and I that he was on his way to an interview with a reporter named Kevin from KOBI TV. Apparently Marshall had already talked to the reporter. We explained to Dr. Foster that Marshall and Kellie were not communicating with us, including concerning this news report. Foster called back later for my full name and our phone number.
(This news feature aired without anyone talking to us. Kellie was referred to as "Brian's mother" and we were not mentioned at all. I was hurt and furious. Later, I obtained a copy of the feature, and we did one of our own with the same reporter. If possible, I will load them on to this site. Otherwise, if you are close enough, I can show it to you sometime in person.)
When we went into Brian's room, he was back in bed and kind of tired. Dr. Ordahl came in to see him (in place of Dr. Fennel); Dave held out his hand to the doctor and said, "I'm Dave", and Brian held out his hand to shake right afterwards and said, "I'm Brian." Ordahl was amazed; he hasn't seen Brian in two weeks.
Brian is no longer getting his "green eggs and ham"/"soylent green" food, because he is eating so much real food! But the PEG tube has to stay in a while longer.
Brian's nurse today is Tom.
We all looked at wedding photos, and talked about Brian being taller than Jesse. He didn't believe it at first. Dave helped by pointing to photos from 1997 where he was standing on a box in order to be as tall as Jesse, then to wedding photos of Brian and Jesse together. We explained to Brian we had been staying across the street at the Cheney House so we could be close to Brian, and he thanked us with a big smile and said, "I appreciate that." When we told him we were going home tomorrow for the day and overnight, he looked worried and asked, "You're coming back?" and we assured him we were.
Brian was scheduled for PT, then OT, then they wanted him to rest for two hours, so he would be ready for the afternoon. We are due back at 1 pm. Brian slept well last night, but awoke at 4:30 am.
9:45 pm Dave and I returned to Brian at 1 pm. Brian ate lunch and asked questions about being in the coma and waking up. We used the October calendar on the white board, and the big November calendar, and circled special dates in October: when he started opening his eyes, when he smiled, when he got the trach. he is still confused about length of time; sometimes he was in the coma three days, sometimes 15 months. We continue to work on this.
I told him what happened the day he went down ("passed out", "went to sleep", "went into the coma" he says), as best I could. He wanted to know what friends were there, so I told him. I said they saved his life, and he agreed he had "great friends".
OT Karen worked with Brian after lunch. They looked at wedding pictures, with Brian telling her who people were. he did well with the most familiar people. Karen also asked Brian where he was (in Eugene, at "Grandma and Grandpa's"), and they used the calendar to figure out the day and date.
The speech therapist, Berl, gave Brian a folder with pages of letters to copy, and Brian did nearly the whole thing (through O), while he was "resting". He is working on making the letters bigger, and while doing so also changed their "personalities", depending on the "mood" he was in. (I no longer recall what this meant)
David the PT worked with Brian again, and said in 6 years of doing this, he has never seen someone progress so rapidly. He had Brian sit up and stick out his chest (posture) and Brian asked, "Like a manly man?"
After PT, Brian got to go for ANOTHER ride. This time, Dave and I went along. We went downstairs to the main lobby, out the doors briefly, then into the corridor looking into the Japanese garden, and back out through the corridor of the maternity ward. In that corridor is a photo of Jesse taken by Chris Briscoe and used for promotional materials. We stopped and showed Brian, who thought it was him. (Chris is a well-known Ashland photographer who was just getting started when Jesse was little. He photographed Jesse's birth - his first - and did others of Jesse when he was a year old and later. The photo at the hospital was of Jesse at a year old. It is one of my favorites.)
Brian wanted to visit ALL the rooms we passed on our trip through the hospital.
Back upstairs, Brian got to sit in his doorway. He thought we were going to leave him "alone in this dull room" and he didn't want that. The three of us sat together while he finished his smoothie, and we sang another smoothie song. This one was about the smoothie that went around the hospital (he had it with him).
Alana, Randy, Max and Chris showed up, and while I went to talk to them, Brian and Nurse Tom had a hilarious exchange: "Brian, you're wiggling a lot. Do you have to go to the bathroom?" "No" "Brian, you're wiggling around a lot. Do you have to go to the bathroom?" "No" "Are you sure?" "Yes" "Are you sure?" "YES!" Then Tom turned and started walking away, and Brian said, with head bent forward, eyebrows raised, very serious, "Tom?" and Tom returned. "Do you have to go to the bathroom?" "No" "Are you sure?" "Yes" "Sure?" "Yes" (This is one of our all-time favorite stories, and we use it in various circumstances with Brian still)
The Quote of the Day, spoken while sitting tall in bed, big voice, "I'm Alive, Well and Awake! And that's the last time I'm gonna say it!" (This is another favorite, and one of my most treasured memories of Brian's return)
Nurse Tom let Dave wheel Brian out to the Waiting Area to visit with Alana and the boys! So they all sat in a corner by a window while Dave and I sat nearby, so we could monitor Brian's safety and fatigue. He was THRILLED, as were the kids, and they had a great visit. Jessica Erickson, Jessica Daly, Vanessa, Ahsa, Mare, and two other girls showed up at around 5 (Brian was out there from around 4), after Marshall arrived at 4:45 pm. Chris, Max and Randy left at that point. Marshall did not sit separately when he arrived, but went right over to where the kids were. When the others arrived, Marshall decided visiting was over and wheeled Brian back to his room.
Dr. Foster got to see Brian with his friends and was pleased.
Randy's dad Wayne called, and told me his friend Joy, who is doing the trail ride, connected randy with KOBI. Max told me he had been interviewed, and that "Brian's mom" had suggested the reporter talk to him. I told Max that I had heard nothing about it until this morning, by chance.
Kate Lewis called. She'll be here Tuesday or Wednesday.
Today was the first day of nearly constant rain.
There will be a concert by Out with Andy and others on December 7th at the Unitarian Center.
Brian was off all monitors during the day.
This evening Dave and I visited with Brian as usual. We all sang "White Rabbit" together, and Dave and I sang the love song "Today" to Brian, who really liked it. He kept looking at us, back and forth, realizing we meant the words for HIM. (Songs from "Surrealistic Pillow" by Jefferson Airplane)
I read 1 1/2 chapters of Alice in Wonderland, and Brian fell asleep. Dave sat with him with the lights out, just to be sure. Possible Providence check-in: Monday at 1 pm. I'll be going in the transport with Brian.
12;20 pm BRIAN WENT FOR A RIDE IN A WHEELCHAIR THIS MORNING. Marshall and Kellie were with him, so Dave and I did not go along, but we were in the Waiting Room when Brian was wheeled down the hall. Brian saw us and broke into a HUGE grin. We walked up to him and he reached to each of us in turn, taking a hand and giving us kisses on our lips.
(Although Brian had been out in the Cadillac Chair, this was his first outing in a regular wheelchair)
Dr. Foster is certain the infection is localized and the blood that was expelled was old. He and Dr. Martin saw Brian this morning. If this is true, Brian could move to Providence on Monday or Tuesday.
Dr. Foster also told Dave and I that he was on his way to an interview with a reporter named Kevin from KOBI TV. Apparently Marshall had already talked to the reporter. We explained to Dr. Foster that Marshall and Kellie were not communicating with us, including concerning this news report. Foster called back later for my full name and our phone number.
(This news feature aired without anyone talking to us. Kellie was referred to as "Brian's mother" and we were not mentioned at all. I was hurt and furious. Later, I obtained a copy of the feature, and we did one of our own with the same reporter. If possible, I will load them on to this site. Otherwise, if you are close enough, I can show it to you sometime in person.)
When we went into Brian's room, he was back in bed and kind of tired. Dr. Ordahl came in to see him (in place of Dr. Fennel); Dave held out his hand to the doctor and said, "I'm Dave", and Brian held out his hand to shake right afterwards and said, "I'm Brian." Ordahl was amazed; he hasn't seen Brian in two weeks.
Brian is no longer getting his "green eggs and ham"/"soylent green" food, because he is eating so much real food! But the PEG tube has to stay in a while longer.
Brian's nurse today is Tom.
We all looked at wedding photos, and talked about Brian being taller than Jesse. He didn't believe it at first. Dave helped by pointing to photos from 1997 where he was standing on a box in order to be as tall as Jesse, then to wedding photos of Brian and Jesse together. We explained to Brian we had been staying across the street at the Cheney House so we could be close to Brian, and he thanked us with a big smile and said, "I appreciate that." When we told him we were going home tomorrow for the day and overnight, he looked worried and asked, "You're coming back?" and we assured him we were.
Brian was scheduled for PT, then OT, then they wanted him to rest for two hours, so he would be ready for the afternoon. We are due back at 1 pm. Brian slept well last night, but awoke at 4:30 am.
9:45 pm Dave and I returned to Brian at 1 pm. Brian ate lunch and asked questions about being in the coma and waking up. We used the October calendar on the white board, and the big November calendar, and circled special dates in October: when he started opening his eyes, when he smiled, when he got the trach. he is still confused about length of time; sometimes he was in the coma three days, sometimes 15 months. We continue to work on this.
I told him what happened the day he went down ("passed out", "went to sleep", "went into the coma" he says), as best I could. He wanted to know what friends were there, so I told him. I said they saved his life, and he agreed he had "great friends".
OT Karen worked with Brian after lunch. They looked at wedding pictures, with Brian telling her who people were. he did well with the most familiar people. Karen also asked Brian where he was (in Eugene, at "Grandma and Grandpa's"), and they used the calendar to figure out the day and date.
The speech therapist, Berl, gave Brian a folder with pages of letters to copy, and Brian did nearly the whole thing (through O), while he was "resting". He is working on making the letters bigger, and while doing so also changed their "personalities", depending on the "mood" he was in. (I no longer recall what this meant)
David the PT worked with Brian again, and said in 6 years of doing this, he has never seen someone progress so rapidly. He had Brian sit up and stick out his chest (posture) and Brian asked, "Like a manly man?"
After PT, Brian got to go for ANOTHER ride. This time, Dave and I went along. We went downstairs to the main lobby, out the doors briefly, then into the corridor looking into the Japanese garden, and back out through the corridor of the maternity ward. In that corridor is a photo of Jesse taken by Chris Briscoe and used for promotional materials. We stopped and showed Brian, who thought it was him. (Chris is a well-known Ashland photographer who was just getting started when Jesse was little. He photographed Jesse's birth - his first - and did others of Jesse when he was a year old and later. The photo at the hospital was of Jesse at a year old. It is one of my favorites.)
Brian wanted to visit ALL the rooms we passed on our trip through the hospital.
Back upstairs, Brian got to sit in his doorway. He thought we were going to leave him "alone in this dull room" and he didn't want that. The three of us sat together while he finished his smoothie, and we sang another smoothie song. This one was about the smoothie that went around the hospital (he had it with him).
Alana, Randy, Max and Chris showed up, and while I went to talk to them, Brian and Nurse Tom had a hilarious exchange: "Brian, you're wiggling a lot. Do you have to go to the bathroom?" "No" "Brian, you're wiggling around a lot. Do you have to go to the bathroom?" "No" "Are you sure?" "Yes" "Are you sure?" "YES!" Then Tom turned and started walking away, and Brian said, with head bent forward, eyebrows raised, very serious, "Tom?" and Tom returned. "Do you have to go to the bathroom?" "No" "Are you sure?" "Yes" "Sure?" "Yes" (This is one of our all-time favorite stories, and we use it in various circumstances with Brian still)
The Quote of the Day, spoken while sitting tall in bed, big voice, "I'm Alive, Well and Awake! And that's the last time I'm gonna say it!" (This is another favorite, and one of my most treasured memories of Brian's return)
Nurse Tom let Dave wheel Brian out to the Waiting Area to visit with Alana and the boys! So they all sat in a corner by a window while Dave and I sat nearby, so we could monitor Brian's safety and fatigue. He was THRILLED, as were the kids, and they had a great visit. Jessica Erickson, Jessica Daly, Vanessa, Ahsa, Mare, and two other girls showed up at around 5 (Brian was out there from around 4), after Marshall arrived at 4:45 pm. Chris, Max and Randy left at that point. Marshall did not sit separately when he arrived, but went right over to where the kids were. When the others arrived, Marshall decided visiting was over and wheeled Brian back to his room.
Dr. Foster got to see Brian with his friends and was pleased.
Randy's dad Wayne called, and told me his friend Joy, who is doing the trail ride, connected randy with KOBI. Max told me he had been interviewed, and that "Brian's mom" had suggested the reporter talk to him. I told Max that I had heard nothing about it until this morning, by chance.
Kate Lewis called. She'll be here Tuesday or Wednesday.
Today was the first day of nearly constant rain.
There will be a concert by Out with Andy and others on December 7th at the Unitarian Center.
Brian was off all monitors during the day.
This evening Dave and I visited with Brian as usual. We all sang "White Rabbit" together, and Dave and I sang the love song "Today" to Brian, who really liked it. He kept looking at us, back and forth, realizing we meant the words for HIM. (Songs from "Surrealistic Pillow" by Jefferson Airplane)
I read 1 1/2 chapters of Alice in Wonderland, and Brian fell asleep. Dave sat with him with the lights out, just to be sure. Possible Providence check-in: Monday at 1 pm. I'll be going in the transport with Brian.
Monday, November 19, 2012
"This is a GOOD circle!"
Thursday 15 November 2001
9:35 pm Dave and Thom spent several hours with Brian today., till PT at 1 pm. I was busy elsewhere. I did go in and watch them play 3-way catch with Brian, who threw accurately, and caught the little basketball 2-handed and one-handed. After lunch (thin liquids at last : iced tea, his request!) he asked me to bring the wedding photos again, because he had been talking about Jesse and Jamie's wedding and writing them an anniversary note. He knew their anniversary, June 25th!
Brian remembers knowing "Happy Birthday"! He asked Dave if he remembered singing it, and Dave had no clue. But I was there, and told Brian what happened! It was my first REAL inkling of his awareness, and HIS first waking memory!
In response to how does talking feel? "It feels like it gets caught on my lips like biting into something." (Note by Dave)
Dave and Thom did some calendar work with Brian. Dave drew an October calendar on the white board.
Brian ate a huge lunch of French bread, Swedish meatballs and noodles, raspberry jello - all his requests. Word went around school that he wants everyone to know that he's awake, so Evan, Chris and Max Young came this afternoon. They all got to visit and Brian was thrilled. He was finishing lunch when I old him, and he started hurrying - "I want to see my friends!" He gave Evan and Max hugs (I saw them).
Later, Alana came with randy, Andy, Vanessa and David. When Alana and randy came in, Brian wanted them to sit and listen to Alice in Wonderland, which Dave was reading. They didn't want to, so they visited with Brian instead. (We should let Brian decide what he wants to do and who he wants to see, as much as possible).
Alana got ALL of them in there, and while they were all gathered around him, Brian said, "This is a GOOD circle!"
This evening, Josh Romberg, Bubby, Alana and Randy visited (Max stayed in the Waiting Room). Brian was very happy and began relaying "memories": Josh got hit in the head (by a soccer ball?) and suffered a brain injury and "took a long time to die". Alana got a bad nosebleed. (Are these dreams? Projections?) At one point I mentioned that he would have to be left alone (by the kids) to sleep, and Brian scoffed and said, "I've been sleeping for four days!"
When Dave had to stop reading, he told Brian I would be back to continue the story. "Good!" said Brian. He was very happy to see me each time today, and gave me a kiss tonight when I came in. Earlier in the afternoon, he said he wanted give everybody "big hugs'. Some time early this morning, Brian tried to climb out of bed, "to go find the shower". Dave and I were falsely accused of trying to teach him to climb out of bed.
Brian often mimics or repeats what others say. Important not to feed him words.
Tonight Brian shot a hoop after the kids left and he got his meds, and was DONE. He was asleep a little after nine; I read some of Alice.
The Sadie Hawkins Dance at the school is now scheduled for December 8th or 9th. Dave, Thom and I will be chaperones, and Dave and I will speak (or just I will). We will find more adults, too. New visiting schedules: Marshall wants 7:30a - 9:30a, and 4:30p - 6:30p. We'll see how it goes. I will miss my early morning time, but I can handle it.
No definitive answer regarding the possible infection in his shoulder. Dr. Martin thinks it's localized and the result of Brian picking at the sutures. He will check it again tomorrow. Brian has more antibiotics, "oral" (PEG tube) and topical. So Providence is put off again, till sometime next week.
Brian is not as fidgety. It usually comes when he has to "use the bathroom".
Robin called: Kate is due for Thanksgiving!
Brian recited all of "Steve Manos" today! (From Spanish class)
9:35 pm Dave and Thom spent several hours with Brian today., till PT at 1 pm. I was busy elsewhere. I did go in and watch them play 3-way catch with Brian, who threw accurately, and caught the little basketball 2-handed and one-handed. After lunch (thin liquids at last : iced tea, his request!) he asked me to bring the wedding photos again, because he had been talking about Jesse and Jamie's wedding and writing them an anniversary note. He knew their anniversary, June 25th!
Brian remembers knowing "Happy Birthday"! He asked Dave if he remembered singing it, and Dave had no clue. But I was there, and told Brian what happened! It was my first REAL inkling of his awareness, and HIS first waking memory!
In response to how does talking feel? "It feels like it gets caught on my lips like biting into something." (Note by Dave)
Dave and Thom did some calendar work with Brian. Dave drew an October calendar on the white board.
Brian ate a huge lunch of French bread, Swedish meatballs and noodles, raspberry jello - all his requests. Word went around school that he wants everyone to know that he's awake, so Evan, Chris and Max Young came this afternoon. They all got to visit and Brian was thrilled. He was finishing lunch when I old him, and he started hurrying - "I want to see my friends!" He gave Evan and Max hugs (I saw them).
Later, Alana came with randy, Andy, Vanessa and David. When Alana and randy came in, Brian wanted them to sit and listen to Alice in Wonderland, which Dave was reading. They didn't want to, so they visited with Brian instead. (We should let Brian decide what he wants to do and who he wants to see, as much as possible).
Alana got ALL of them in there, and while they were all gathered around him, Brian said, "This is a GOOD circle!"
This evening, Josh Romberg, Bubby, Alana and Randy visited (Max stayed in the Waiting Room). Brian was very happy and began relaying "memories": Josh got hit in the head (by a soccer ball?) and suffered a brain injury and "took a long time to die". Alana got a bad nosebleed. (Are these dreams? Projections?) At one point I mentioned that he would have to be left alone (by the kids) to sleep, and Brian scoffed and said, "I've been sleeping for four days!"
When Dave had to stop reading, he told Brian I would be back to continue the story. "Good!" said Brian. He was very happy to see me each time today, and gave me a kiss tonight when I came in. Earlier in the afternoon, he said he wanted give everybody "big hugs'. Some time early this morning, Brian tried to climb out of bed, "to go find the shower". Dave and I were falsely accused of trying to teach him to climb out of bed.
Brian often mimics or repeats what others say. Important not to feed him words.
Tonight Brian shot a hoop after the kids left and he got his meds, and was DONE. He was asleep a little after nine; I read some of Alice.
The Sadie Hawkins Dance at the school is now scheduled for December 8th or 9th. Dave, Thom and I will be chaperones, and Dave and I will speak (or just I will). We will find more adults, too. New visiting schedules: Marshall wants 7:30a - 9:30a, and 4:30p - 6:30p. We'll see how it goes. I will miss my early morning time, but I can handle it.
No definitive answer regarding the possible infection in his shoulder. Dr. Martin thinks it's localized and the result of Brian picking at the sutures. He will check it again tomorrow. Brian has more antibiotics, "oral" (PEG tube) and topical. So Providence is put off again, till sometime next week.
Brian is not as fidgety. It usually comes when he has to "use the bathroom".
Robin called: Kate is due for Thanksgiving!
Brian recited all of "Steve Manos" today! (From Spanish class)
October 2001 Calendar
Click on the calendar to get the full view.
Sunday, November 18, 2012
End of a Long Day
November 14th : Part 3
Art and Butch (Filliger) visited this afternoon.
Alana came in this evening at 6:30.
This morning: Dave had Brian in the chair looking at his wall of pictures and posters, prior to our talk about the coma. I told him I could take things down for him and he responded with irritation, "I know you can, Mom!" and growled. It was VERY normal Brian, playful irritation.
This evening Brian didn't want Dave to leave the room, after Dave went out to get the smoothie. "Just stay," he ordered. When I was reading Alice in Wonderland, Brian kept looking over to make sure Dave was still there (did it twice). Brian wanted to lie down and rest, and I asked if he'd like me to read to him. He said, "Sure" and was rapt during the reading, which was interrupted by dinner. Brian is very vulnerable right now. We all need to be attentive to his needs, listen to him, be honest, and praise all his efforts. He needs all our support, still. He is more aware now of his world, his place in it, what has happened to him.
10:30 pm I was with Brian from 8:30 till nearly 10. He fell asleep, exhausted after a long, HUGE day. I read Alice in Wonderland again. Dave did not stay with Brian; he took Alana home, then cam back here to the Cheney House.
While I was with Brian, he was in the chair drawing for a while. He was able to scoot himself up using his arms and legs whenever he started sliding down (he was getting tired). At one point, near the end of his sitting up, he told me I needed to lay him down in the chair so I could pull him up. He ended up pushing himself up, with arms and legs, and then I sat the chair up again. When he was tired, he said, "I want to lay down", so Nurse Joleen came in. Brian got his legs onto the bed and as soon as his waist belt was unfastened, he leaned over and dove onto the bed! We got him straightened out (he was laying on his right arm) but he was pleased with himself.
At one point, in bed, Brian peed and tried to tell me and I didn't get it - I thought he was telling me to read. Finally he said - "You don't understand, Mom. I peed." I apologized and later explained that when he talks fast it's hard to understand, but when he slowed down I got it. he understood.
When Alana was with him. he was recalling numerous events from just prior to the heart attack, including swinging her around in the Quad at school, watching Fight Club at Ryan Davidson's, and feeling sad because she couldn't go to Homecoming. She asked if he recalled who was with him the day of the heart attack, and he recalled several people. He also asked her, "Does every one know I'm awake?" She asked him who he wanted to have visit, and after listing a few, Brian said, "Fuck, bring as many as you can rally!"
Alana talked a little about the strained family dynamics. Brian said, "I wish I could change that," and Alana looked him right in the face and told him, "You don't have to do anything except take care of yourself." He looked back and said, "I think I can do that." he also asked her, "Is my mom coming back?" (tonight) She said "Yes" and he replied, "Good!" He greeted me with a BIG smile and a "Hi" when I returned this evening.
Brian, Dave and I were discussing this afternoon how people sometimes talked over him, though it didn't happen often, and didn't ask him questions. He told Dave to ask him a question, so Dave asked, "what do you remember from the coma?" Brian replied, "Well, that's hard." He then started describing something about the shape of the white washcloths he had. We aren't certain if there was a connection.
Once this afternoon, Brian asked me, "Did you always speak English?" He asked Dave, "Did you ever have a girlfriend? Did you ever have a boyfriend?"
Brian wanted me to give him a ride to the home of Janet the OT. Brian wants to go to Good Times in Ashland with Alana this weekend. (A burger place that was popular with the kids when they were younger)
Re: ST Berl and categories: for clothing Brian said, "shirt, cat, pants". Berl thought "cat" was a total mistake, but I pointed out it could be "cap" or "hat". She agreed it could be, a type of aphasia.
Dave and I made contact via phone with Janet Murphy, a social worker at Providence.
November 18, 2012
The recall of events so close to the cardiac arrest is amazing, considering those were generally the things he forgot. However, if they had some kind of emotional hook (Alana) or they were visual (the movie, which he had seen before) he was more likely to remember them. This has remained true.
Many Questions
November 14th : Part 2
6:30 pm A breakthrough day. When Dave and I were with Brian this afternoon, he asked me, "Why am I in the hospital?" I explained he had had a heart attack, and where and when. We showed Brian the big calendar because he wanted to know what day it was. Then I showed him a smaller calendar page with October, November and December, on which I had written special events from October, about Brian. He read some of them. Brian wanted to know if he'd been in a coma, how long, when he'd awakened, and repeatedly asked today's date because "I'm trying to figure out the other days."
Brian is experiencing a sense of loss. He said, "Jesse and Jamie died," with tears in his eyes. We told him they were alive, safe, and he lit up. "They're alive!" Then he said "Someone in the family died." We told him no one died, everyone is safe. He asked a couple more times about Jesse and Jamie. He is very attached to them. And someone DID die, although we didn't discuss it : Brian died, briefly, on October 8th.
At one point I was sitting on the bed and Dave was by Brian's side (Brian was in the chair this whole time). Brian said, "Someone was in a coma?" We replied, "YOU were in a coma!" "And I woke up!" Thrilled, big smile. And he reached out to us, held me, kissed me on the lips twice, held Dave, kissed him on the lips and cheek, and we all shed happy tears in a group hug.
Brian wants to know how long he was in a coma, and how long he has been awake, when he had the heart attack. When he saw my words "Brian went down" on the 8th on the small calendar, I explained that I wrote it that way because it was like he was down in the ocean, in a deep sleep.
We told him we had been with him every day, Dave all night, that he had been working hard to heal himself. He needs LOTS of praise.
7:45 pm The PT and OT and ST are AMAZED at how ell Brian is doing. PT David said he had his best day yet. OT Janet says he will come through "smelling like a rose". ST Berl is working on swallowing and categories (clothing, furniture).
Late this afternoon we gave Brian his smoothie. He said, "Sing a song". So Dave, Brian and I sang the "Soothing Smoothie Song" while Brian drank his smoothie ("sipped his smoothie through a straw"). When finished, he told Dave, "All for me, none for you" with a sly grin. He said "thank you" to Dave for the smoothie and "Dave May, Smoothie every day".
"I,m proud to be your friend" (to Dave) "I'm glad you guys are in my life" (to us) Janet suggested we get a phone in Brian's room so Jesse and Jamie could call, so he can be reassured that they are okay.
Nurse Nancy asked him if he would like to sit in the chair for dinner. "Possibly", he replied. Brian talked much of the time today, asking questions and conversing. He is much easier to understand than yesterday, and his voice sounds more normal.
During dinner (fish, carrots, tapioca, soup, milk, juice) his hand was shaking but he was doing a great job with the awkward pieces. I complimented him, and he said, "You're just saying that." I told him no, it was true. "I'm so clumsy." So I explained that was normal when a person has been in a coma, that it would take a while to be back to normal, but he was moving really fast (had moved/progressed). I pointed out how he COULDN'T feed himself two days ago, and he said, "I HAVE!" (progressed) I also pointed out how he was talking so much more easily today.
November 18, 2012
The end of Part 2. Brian was improving in a rapid upward trajectory that impressed everyone who worked with him. This would continue for some time. Note that I refer to the event as a "heart attack". We had not gotten the correct terminology down yet.
These were amazing days.
6:30 pm A breakthrough day. When Dave and I were with Brian this afternoon, he asked me, "Why am I in the hospital?" I explained he had had a heart attack, and where and when. We showed Brian the big calendar because he wanted to know what day it was. Then I showed him a smaller calendar page with October, November and December, on which I had written special events from October, about Brian. He read some of them. Brian wanted to know if he'd been in a coma, how long, when he'd awakened, and repeatedly asked today's date because "I'm trying to figure out the other days."
Brian is experiencing a sense of loss. He said, "Jesse and Jamie died," with tears in his eyes. We told him they were alive, safe, and he lit up. "They're alive!" Then he said "Someone in the family died." We told him no one died, everyone is safe. He asked a couple more times about Jesse and Jamie. He is very attached to them. And someone DID die, although we didn't discuss it : Brian died, briefly, on October 8th.
At one point I was sitting on the bed and Dave was by Brian's side (Brian was in the chair this whole time). Brian said, "Someone was in a coma?" We replied, "YOU were in a coma!" "And I woke up!" Thrilled, big smile. And he reached out to us, held me, kissed me on the lips twice, held Dave, kissed him on the lips and cheek, and we all shed happy tears in a group hug.
Brian wants to know how long he was in a coma, and how long he has been awake, when he had the heart attack. When he saw my words "Brian went down" on the 8th on the small calendar, I explained that I wrote it that way because it was like he was down in the ocean, in a deep sleep.
We told him we had been with him every day, Dave all night, that he had been working hard to heal himself. He needs LOTS of praise.
7:45 pm The PT and OT and ST are AMAZED at how ell Brian is doing. PT David said he had his best day yet. OT Janet says he will come through "smelling like a rose". ST Berl is working on swallowing and categories (clothing, furniture).
Late this afternoon we gave Brian his smoothie. He said, "Sing a song". So Dave, Brian and I sang the "Soothing Smoothie Song" while Brian drank his smoothie ("sipped his smoothie through a straw"). When finished, he told Dave, "All for me, none for you" with a sly grin. He said "thank you" to Dave for the smoothie and "Dave May, Smoothie every day".
"I,m proud to be your friend" (to Dave) "I'm glad you guys are in my life" (to us) Janet suggested we get a phone in Brian's room so Jesse and Jamie could call, so he can be reassured that they are okay.
Nurse Nancy asked him if he would like to sit in the chair for dinner. "Possibly", he replied. Brian talked much of the time today, asking questions and conversing. He is much easier to understand than yesterday, and his voice sounds more normal.
During dinner (fish, carrots, tapioca, soup, milk, juice) his hand was shaking but he was doing a great job with the awkward pieces. I complimented him, and he said, "You're just saying that." I told him no, it was true. "I'm so clumsy." So I explained that was normal when a person has been in a coma, that it would take a while to be back to normal, but he was moving really fast (had moved/progressed). I pointed out how he COULDN'T feed himself two days ago, and he said, "I HAVE!" (progressed) I also pointed out how he was talking so much more easily today.
November 18, 2012
The end of Part 2. Brian was improving in a rapid upward trajectory that impressed everyone who worked with him. This would continue for some time. Note that I refer to the event as a "heart attack". We had not gotten the correct terminology down yet.
These were amazing days.
Thursday, November 15, 2012
"Does everybody know I'm awake?"
November 14th : Part One
The journal entry for this day is 11 pages long. It was a busy day! I am going to break it up into parts for you - and for me. This may put me behind a bit in my goal of trying to stay on the corresponding date, but it will be worth it.
Wednesday 14 November 2001
10:25 am Brian was originally scheduled to move to Providence tomorrow, but he has some discharge leaking from the implant area, and it is being tested for infection. This could entail moving the implant to the other side. Meanwhile, his move will be postponed while the tests are run, possibly to Monday. He is not in any pain from it.
This morning Brian's catheter was removed! So now he will be working on telling people when he has to pee (and have bowel movements). When Brian goes to Providence, I will get to ride in the wheelchair transport with him. I let Kathy, the Discharge Services person, know that Dave and I are the most available; they let one person ride in the vehicle. She will check with Christie at Providence as to the time (or I will call Christie).
Brian was eating breakfast when Dave and I went in: bacon, omelette, applesauce, muffin, apple juice, milk. Dr. Fennel was talking to us and said, "Look at that guy eat!" Brian ate virtually every bite. We offered him yesterday's smoothie, but he was too full. He wanted to know if it was a big smoothies, and said, "Make me a small smoothie," We told him he could drink half!
Brian asked us, "Did you have caffeine today?" He wanted to know if we had coffee or tea. "I don't want coffee," he said with a frown.
Brian told us to "Open the doors and push me out." He wants to go for a ride in his chair! We will try to get this arranged. He is with the PT David now, so he is already in the chair.
Better nurse today: Linda from Monday.
Dave explained to Brian that PT would be at ten, so we couldn't get him in the chair yet, and had Brian look at the clock to see what time it was (or how much time was left). Brian said "14 minutes", which was correct. Later Dave asked him again, and Brian said "12 minutes", correcting Dave who had said it was about fifteen. The last time Dave asked, Brian was again correct, "5 minutes". (So exciting that this skill was intact!!)
When David the PT came in, Brian wanted to show him the proofs of the 8x10 self-portrait prints and cards we brought from Eric Warren. David asked if he did the drawing last year, and Brian frowned/scoffed and replied, "No, at the beginning of the school year," which is true.
2:05 pm "Does everybody know I'm awake?" "I'm not sure if I remember that, but it sounds comfortable."
Two quotes of Brian's from today. The latter in response to Dave holding Brian's hand in the same grip he did during the coma and saying, "Hi Brian. It's me, Dave." Brian is starting to ask why he is in the hospital, how long, how long he was in the coma. He knows and doesn't know he was in the coma.
Thus began the continuing saga of Brian's memory loss. We had to explain and remind and try to explain again what happened. He also had no concept of the passage of time - nor does he today. Brian is a true Be Here Now person. This time period is just stories we tell him. He remembers the stories.
The journal entry for this day is 11 pages long. It was a busy day! I am going to break it up into parts for you - and for me. This may put me behind a bit in my goal of trying to stay on the corresponding date, but it will be worth it.
Wednesday 14 November 2001
10:25 am Brian was originally scheduled to move to Providence tomorrow, but he has some discharge leaking from the implant area, and it is being tested for infection. This could entail moving the implant to the other side. Meanwhile, his move will be postponed while the tests are run, possibly to Monday. He is not in any pain from it.
This morning Brian's catheter was removed! So now he will be working on telling people when he has to pee (and have bowel movements). When Brian goes to Providence, I will get to ride in the wheelchair transport with him. I let Kathy, the Discharge Services person, know that Dave and I are the most available; they let one person ride in the vehicle. She will check with Christie at Providence as to the time (or I will call Christie).
Brian was eating breakfast when Dave and I went in: bacon, omelette, applesauce, muffin, apple juice, milk. Dr. Fennel was talking to us and said, "Look at that guy eat!" Brian ate virtually every bite. We offered him yesterday's smoothie, but he was too full. He wanted to know if it was a big smoothies, and said, "Make me a small smoothie," We told him he could drink half!
Brian asked us, "Did you have caffeine today?" He wanted to know if we had coffee or tea. "I don't want coffee," he said with a frown.
Brian told us to "Open the doors and push me out." He wants to go for a ride in his chair! We will try to get this arranged. He is with the PT David now, so he is already in the chair.
Better nurse today: Linda from Monday.
Dave explained to Brian that PT would be at ten, so we couldn't get him in the chair yet, and had Brian look at the clock to see what time it was (or how much time was left). Brian said "14 minutes", which was correct. Later Dave asked him again, and Brian said "12 minutes", correcting Dave who had said it was about fifteen. The last time Dave asked, Brian was again correct, "5 minutes". (So exciting that this skill was intact!!)
When David the PT came in, Brian wanted to show him the proofs of the 8x10 self-portrait prints and cards we brought from Eric Warren. David asked if he did the drawing last year, and Brian frowned/scoffed and replied, "No, at the beginning of the school year," which is true.
2:05 pm "Does everybody know I'm awake?" "I'm not sure if I remember that, but it sounds comfortable."
Two quotes of Brian's from today. The latter in response to Dave holding Brian's hand in the same grip he did during the coma and saying, "Hi Brian. It's me, Dave." Brian is starting to ask why he is in the hospital, how long, how long he was in the coma. He knows and doesn't know he was in the coma.
Thus began the continuing saga of Brian's memory loss. We had to explain and remind and try to explain again what happened. He also had no concept of the passage of time - nor does he today. Brian is a true Be Here Now person. This time period is just stories we tell him. He remembers the stories.
Tuesday, November 13, 2012
Writing His Name
Tuesday 13 November 2001
7:50 am Last night Dave came back and reported to me that Brian said, "One Question, One Answer" (it sounded like caps, the way Dave presented it), and "In 1492, Columbus sailed the ocean blue." They both had a good laugh over the latter. Dave said he tried 15 times to get it loud enough. I don't know any more about the context.
12:15 pm I was with Brian from 8 am until 11:30, when he fell asleep (while I read him Alice in Wonderland).
Brian had a busy morning, but not hectic. Another new nurse: Diane (he had Linda yesterday - very nice and helpful). Diane won't give him solid food until she has a written order; she's also a bit brusque and insensitive to Brian's need for privacy. While Brian was still in bed, he was looking over at his posters on the wall. I asked if he wanted me to take one down for him to look at, and he said "Sure." I brought down the one with the most messages, sat him up more in bed, and he held the poster and looked at it for 15 minutes or so. I am certain he was reading it. He would point to messages he couldn't read, and I read them. He smiled as he was reading/looking. Then I took down a be-ribboned set of notes on construction paper, from a Choir retreat, that was hanging on his IV pole (from the ceiling). He wanted that, so I gave it to him and put the poster up. I helped him negotiate the little pages a bit, then let him read and look on his own.
(Yesterday, when I was re-organizing my closet, I found this string of notes and couldn't remember where they came from. I will try to scan them in tomorrow when I have more time. Brian sang bass in the choir; he was new that year.)
We were interrupted a little after ten by the physical therapist, Janet, and her silly helper, Valerie. They had a good time. Janet worked with Brian's legs the way we do, then they helped him sit up on the edge of the bed and get from there into the Cadillac Chair. he helped fasten the waist belt and scoot himself up, sitting VERY straight.
Brian had not had breakfast and the only order Diane had was for thickened liquids, so she got him a milkshake. She asked him what flavor: "Strawberry? Chocolate?" "Chocolate!" (Byt his time, Marshall was in there, too).
While we waited for the milkshake, I took down the poster of colored photos of Brian, and he looked at them with it sitting on the table in front of him. We helped him pull one picture off because he wanted to look at it closer. (I encountered these yesterday, too)
The milkshake was a big hit. "It's cold," he told Diane. He drank the whole thing without a straw, until the end when he sucked up the dregs.
Brian saw Marshall's cell phone and asked, "what's your cell phone number?" Marshall wrote it on a little piece of paper, and gave the paper to Brian, who looked at it intently and read the numbers aloud (in his whisper voice). I asked Brian if he wanted my cell phone number and he replied "Sure." Marshall handed me his pen, but Brian wanted to write the number. So he wrote each numeral carefully in tiny writing. The only numbers that weren't clear were the "6" and the "3" (which looked like a circle and an "8" respectively). The other numbers were 2,1,4,7,8. (The tiny writing was a result of disgraphia)
Diane wanted to know if Brian wanted to get back in bed to rest, since he would have a busy afternoon. He immediately started getting out of the chair! Marshall took this as his cue to leave and interrupted Brian's writing to demand (insist on - given reluctantly) a hug. Then Brian got to "help" get himself back in bed. he got cleaned up, then stretched out quietly under a blanket while I read to him. It is important that we do not demand behavior - hugs, kisses (I've been guilty of insisting on giving him a kiss), anything else - unless it's requested and therapeutic. Patience - he is very patient right now - is required from us. He is doing everything in his own time.
9:55 pm I read Alice in Wonderland and relaxed Brian and put him to sleep. Having him lying flat in bed also helps him relax. Dave and I met with Eric Warren to look at the proofs of the card and 8x10 inch print of Brian's pencil self-portrait. We made a few corrections and it will go to the printer tomorrow. All donated!! Another fundraiser! Brian seems pleased with the idea. He hasn't seen the proofs yet. (I have posted a copy of this print previously) Wayne Fitzpatrick called tonight to check on Brian. He told me his friend Joy's 10 mile trail ride fundraiser is happening this weekend. Aunt Merrikat called tonight. Alana visited. Art and Butch Filliger also visited this afternoon.
BRIAN WROTE HIS WHOLE NAME, in tiny letters, on lined paper. (I will look for this)
When Dave and I were with Brian this afternoon, he immediately wanted us to help him sit up (after the PT, Janet, had been in working his torso and legs). So we lowered the sidebars on Dave's side, put Dave's shoes on Brian's feet for better traction, and Brian sat up virtually unaided - I had my hands at his back, but he didn't need them, and Dave barely held his left hand. Brian had some trouble keeping his feet on the floor, and couldn't sit up long, but he did it three or four times. Then Nurse Diane got upset and insisted he lie down on his bed again.
Brian got to have solid food for lunch, and ate everything, by himself: grape juice, sweet and sour chicken, asparagus, vanilla ice cream and milk. Dave made Brian a smoothie, but never got an opportunity to give it to him.
Dr. Sullivan visited Brian briefly this morning, and Brian smiled when he came in. Dr. Sullivan asked, "How are you?" and Brian replied, "Fine. How are you?" He also gave the doctor a classic errant right foot to the chest, which caused smiles on both sides. "Well, hello," said Dr. Sullivan. Rumor has it that Brian is going to Providence on Thursday - relayed by Alana, who heard it from Marshall.
Today Brian missed his echocardiogram appointment that was scheduled when he saw Dr. Foster in September.
7:50 am Last night Dave came back and reported to me that Brian said, "One Question, One Answer" (it sounded like caps, the way Dave presented it), and "In 1492, Columbus sailed the ocean blue." They both had a good laugh over the latter. Dave said he tried 15 times to get it loud enough. I don't know any more about the context.
12:15 pm I was with Brian from 8 am until 11:30, when he fell asleep (while I read him Alice in Wonderland).
Brian had a busy morning, but not hectic. Another new nurse: Diane (he had Linda yesterday - very nice and helpful). Diane won't give him solid food until she has a written order; she's also a bit brusque and insensitive to Brian's need for privacy. While Brian was still in bed, he was looking over at his posters on the wall. I asked if he wanted me to take one down for him to look at, and he said "Sure." I brought down the one with the most messages, sat him up more in bed, and he held the poster and looked at it for 15 minutes or so. I am certain he was reading it. He would point to messages he couldn't read, and I read them. He smiled as he was reading/looking. Then I took down a be-ribboned set of notes on construction paper, from a Choir retreat, that was hanging on his IV pole (from the ceiling). He wanted that, so I gave it to him and put the poster up. I helped him negotiate the little pages a bit, then let him read and look on his own.
(Yesterday, when I was re-organizing my closet, I found this string of notes and couldn't remember where they came from. I will try to scan them in tomorrow when I have more time. Brian sang bass in the choir; he was new that year.)
We were interrupted a little after ten by the physical therapist, Janet, and her silly helper, Valerie. They had a good time. Janet worked with Brian's legs the way we do, then they helped him sit up on the edge of the bed and get from there into the Cadillac Chair. he helped fasten the waist belt and scoot himself up, sitting VERY straight.
Brian had not had breakfast and the only order Diane had was for thickened liquids, so she got him a milkshake. She asked him what flavor: "Strawberry? Chocolate?" "Chocolate!" (Byt his time, Marshall was in there, too).
While we waited for the milkshake, I took down the poster of colored photos of Brian, and he looked at them with it sitting on the table in front of him. We helped him pull one picture off because he wanted to look at it closer. (I encountered these yesterday, too)
The milkshake was a big hit. "It's cold," he told Diane. He drank the whole thing without a straw, until the end when he sucked up the dregs.
Brian saw Marshall's cell phone and asked, "what's your cell phone number?" Marshall wrote it on a little piece of paper, and gave the paper to Brian, who looked at it intently and read the numbers aloud (in his whisper voice). I asked Brian if he wanted my cell phone number and he replied "Sure." Marshall handed me his pen, but Brian wanted to write the number. So he wrote each numeral carefully in tiny writing. The only numbers that weren't clear were the "6" and the "3" (which looked like a circle and an "8" respectively). The other numbers were 2,1,4,7,8. (The tiny writing was a result of disgraphia)
Diane wanted to know if Brian wanted to get back in bed to rest, since he would have a busy afternoon. He immediately started getting out of the chair! Marshall took this as his cue to leave and interrupted Brian's writing to demand (insist on - given reluctantly) a hug. Then Brian got to "help" get himself back in bed. he got cleaned up, then stretched out quietly under a blanket while I read to him. It is important that we do not demand behavior - hugs, kisses (I've been guilty of insisting on giving him a kiss), anything else - unless it's requested and therapeutic. Patience - he is very patient right now - is required from us. He is doing everything in his own time.
9:55 pm I read Alice in Wonderland and relaxed Brian and put him to sleep. Having him lying flat in bed also helps him relax. Dave and I met with Eric Warren to look at the proofs of the card and 8x10 inch print of Brian's pencil self-portrait. We made a few corrections and it will go to the printer tomorrow. All donated!! Another fundraiser! Brian seems pleased with the idea. He hasn't seen the proofs yet. (I have posted a copy of this print previously) Wayne Fitzpatrick called tonight to check on Brian. He told me his friend Joy's 10 mile trail ride fundraiser is happening this weekend. Aunt Merrikat called tonight. Alana visited. Art and Butch Filliger also visited this afternoon.
BRIAN WROTE HIS WHOLE NAME, in tiny letters, on lined paper. (I will look for this)
When Dave and I were with Brian this afternoon, he immediately wanted us to help him sit up (after the PT, Janet, had been in working his torso and legs). So we lowered the sidebars on Dave's side, put Dave's shoes on Brian's feet for better traction, and Brian sat up virtually unaided - I had my hands at his back, but he didn't need them, and Dave barely held his left hand. Brian had some trouble keeping his feet on the floor, and couldn't sit up long, but he did it three or four times. Then Nurse Diane got upset and insisted he lie down on his bed again.
Brian got to have solid food for lunch, and ate everything, by himself: grape juice, sweet and sour chicken, asparagus, vanilla ice cream and milk. Dave made Brian a smoothie, but never got an opportunity to give it to him.
Dr. Sullivan visited Brian briefly this morning, and Brian smiled when he came in. Dr. Sullivan asked, "How are you?" and Brian replied, "Fine. How are you?" He also gave the doctor a classic errant right foot to the chest, which caused smiles on both sides. "Well, hello," said Dr. Sullivan. Rumor has it that Brian is going to Providence on Thursday - relayed by Alana, who heard it from Marshall.
Today Brian missed his echocardiogram appointment that was scheduled when he saw Dr. Foster in September.
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