Monday 5 November 2001
8:57 pm Dave and I are home, thanks to Thom Little, who volunteered to stay the afternoon, evening and night (till 10) for us.
I spent the morning with Brian, 8 till 11:45. He brushed his teeth alone and took off his socks again. Penny shaved him and he pursed his lips for her to make it easier. Then he looked in a mirror, opening his mouth wide - to look down his throat?H e got to see the trach, too. Earlier, he had been watching himself in the tv screen, covering his face partially with a washcloth t be silly.
I got to stay in the room when the OT Karen worked with Brian. When she sat him up on the side of the bed, I noticed there was a 50-cent piece sized bare patch worn on the back of his head, from turning it back and forth.
Karen, Penny and I got Brian into the chair, where Karen worked his right arm and got him to count with her ( I saw "six", "eight" and "ten"). She did range of motion and bicep curls with him. She did the left arm when he was in bed. Brian touched his nose, his ear (right hand, right ear) and Karen's nose, on command. He had trouble touching his left hand ("Touch your other hand"). He held up one finger, three fingers and five fingers - all on his left hand. And he and Karen arm-wrestled with his right arm, when he didn't want to cooperate at first. He likes her - she is good with him. He sat in the chair quite a while. He hugged me with his right arm and held me close to him with the arm wrapped around my waist and back, for several minutes. It was VERY sweet to snuggle with my son!
Dr. Foster came in briefly, and got a big smile from Brian. Dr. Fennel came in and has arranged for Dr. Traynor to put in a smaller trach (it was to be today or tomorrow). It will be one that Brian can talk with, if he is swallowing well enough when they deflate the little balloon collar inside. Yay!
Brian's friend Ryan Davidson visited with his mom and brought a copy of the program from "Arsenic and Old Lace", the play Ryan's in. Ryan has dedicated his performance to Brian.
The Re-hab Team will have a meeting about Brian on Wednesday morning. I will meet with one or all of them around 9 am that morning (along with Dave, and Marshall and Kellie, if they make it). Time to make plans.
Ali visited Brian this morning, as did Marshall.
Conflicts with Marshall and Kellie.
Mary Kathryn called.
Marc, Jessica Daly and Bubby visited, in the evening.
Thursday, November 8, 2012
Wednesday, November 7, 2012
Drawing!!!
Sunday 4 November 2001
6:10 pm Brian has had a VERY fine, active day.
This morning, with Alana and I, he pulled off his left sock with his right hand, lifting up his leg to reach it. Then I brought out the white board, gave him the red pen, and Alana and I held the board while BRIAN DREW! It looked like he drew himself in bed, then wrote his name near the feet. (or a dragon with fiery hair?) (Oh, if only we had phones with cameras then!!!!)
Dr. Ordahl visited. Said they'd probably do a bronc tomorrow. Brian hasn't had any coughing fits, but his lungs are "coarse". The sputum coning up is clear to white.
Aunt Mary and Brittany visited late in the morning.
Thom came and spent the afternoon with Brian, after the 1 pm PT session. Brian was in his chair. Ayal and Sara (Sada) visited (school friends). While Ayal was there, they flipped through a cd book (after asking Brian if he wants music and getting a nod). Brian picked a cd and took it out of the book himself: Orbital, "In Sides", one we've played frequently.
Thom played with the volleyball (from the AHS volleyball team) with Brian, getting Brian to punch the ball. Brian also drew what looked like a picture of Thom. Very deliberate with all the drawing today, concentrating, wiping out, re-doing. Thom showed Brian the November calendar, and mentioned that Brian had a birthday coming next month - "Isn't it the 8th?" - and Brian pointed to the 9. Thom turned the calendar sideways and asked him again, and Brian again pointed to the 9. (Brian's birthday is December 9th)
Brian nodded "Yes" twice for Thom - very small nods; it's harder to do - and shook his head "No".
Thom suggested a therapy ball for Brian's hands. And that we try to curb morphine, ativan use. Brian was finally able to reach the monitor today - and turned it off! Thom is helping Eric Warren, Alana, and Mark Schoenleber connect to arrange fund-raiser using Brian's art. (small posters and cards to sell).
Brian is currently dozing and waking. I am in his room. It's 6:35 pm.
Dave and I helped change Brian's PICC line this morning.
7:40 pm While I was in with Brian, he pulled his blanket up off his legs, and pulled his socks off his feet. (How many moms recognize this behavior??) Deb is his nurse tonight. I showed Brian the drawings in the tablet I brought in for him. Tomorrow I'll bring pens and pencils, and maybe a smaller sketchbook. Also another notebook for people to write in when they visit, to keep in his room.
I was in there for an hour. Brian's heartrate is in the 90s, everything else is fine. He was kicking and pushing with his legs, and looking at the drawings, photos and posters on his wall. Jennifer let me stay during a shift change.
Brian likes to throw his right leg over the side rail and lay sprawled in the bed. (This is a 6 foot 4 inch tall young man, by the way)
9:37 pm Max, Max, Randy and Josh came to visit. All but Randy spent 8-9 with Brian; Randy has a sore throat. Brian enjoyed having them.
I kissed Brian goodnight and left him w/Dave.
Marshall and Kellie gone all day.
November 7, 2012
The days became filled with activity, discovery, life! Even though he still was unable to speak, Brian was obviously very busy and communicative. His mischievous nature was coming out in full, and he was such a joy just to be with. Watching him draw was astounding; I still remember that so clearly. He really had fun playing with Thom, who has always been wonderful with him. It was a period of rapid re-growth for Brian.
6:10 pm Brian has had a VERY fine, active day.
This morning, with Alana and I, he pulled off his left sock with his right hand, lifting up his leg to reach it. Then I brought out the white board, gave him the red pen, and Alana and I held the board while BRIAN DREW! It looked like he drew himself in bed, then wrote his name near the feet. (or a dragon with fiery hair?) (Oh, if only we had phones with cameras then!!!!)
Dr. Ordahl visited. Said they'd probably do a bronc tomorrow. Brian hasn't had any coughing fits, but his lungs are "coarse". The sputum coning up is clear to white.
Aunt Mary and Brittany visited late in the morning.
Thom came and spent the afternoon with Brian, after the 1 pm PT session. Brian was in his chair. Ayal and Sara (Sada) visited (school friends). While Ayal was there, they flipped through a cd book (after asking Brian if he wants music and getting a nod). Brian picked a cd and took it out of the book himself: Orbital, "In Sides", one we've played frequently.
Thom played with the volleyball (from the AHS volleyball team) with Brian, getting Brian to punch the ball. Brian also drew what looked like a picture of Thom. Very deliberate with all the drawing today, concentrating, wiping out, re-doing. Thom showed Brian the November calendar, and mentioned that Brian had a birthday coming next month - "Isn't it the 8th?" - and Brian pointed to the 9. Thom turned the calendar sideways and asked him again, and Brian again pointed to the 9. (Brian's birthday is December 9th)
Brian nodded "Yes" twice for Thom - very small nods; it's harder to do - and shook his head "No".
Thom suggested a therapy ball for Brian's hands. And that we try to curb morphine, ativan use. Brian was finally able to reach the monitor today - and turned it off! Thom is helping Eric Warren, Alana, and Mark Schoenleber connect to arrange fund-raiser using Brian's art. (small posters and cards to sell).
Brian is currently dozing and waking. I am in his room. It's 6:35 pm.
Dave and I helped change Brian's PICC line this morning.
7:40 pm While I was in with Brian, he pulled his blanket up off his legs, and pulled his socks off his feet. (How many moms recognize this behavior??) Deb is his nurse tonight. I showed Brian the drawings in the tablet I brought in for him. Tomorrow I'll bring pens and pencils, and maybe a smaller sketchbook. Also another notebook for people to write in when they visit, to keep in his room.
I was in there for an hour. Brian's heartrate is in the 90s, everything else is fine. He was kicking and pushing with his legs, and looking at the drawings, photos and posters on his wall. Jennifer let me stay during a shift change.
Brian likes to throw his right leg over the side rail and lay sprawled in the bed. (This is a 6 foot 4 inch tall young man, by the way)
9:37 pm Max, Max, Randy and Josh came to visit. All but Randy spent 8-9 with Brian; Randy has a sore throat. Brian enjoyed having them.
I kissed Brian goodnight and left him w/Dave.
Marshall and Kellie gone all day.
November 7, 2012
The days became filled with activity, discovery, life! Even though he still was unable to speak, Brian was obviously very busy and communicative. His mischievous nature was coming out in full, and he was such a joy just to be with. Watching him draw was astounding; I still remember that so clearly. He really had fun playing with Thom, who has always been wonderful with him. It was a period of rapid re-growth for Brian.
Future Plans
Saturday 3 November 2001
10:15 am I spent an hour and a half with Brian this morning. He was very active, "running" his legs, trying to get his "space boots" off (They were to keep him feet from curling in), moving his arms, trying to get blood gas laser monitor off his right index finger. His right arm and hand are generally more active than his left; he clenches his left hand still more than his right (not surprising since he is right-handed). I told him to wiggle his fingers and he held up his right hand and wiggled the fingers, smiling. Brian likes it when people talk TO him, not around or about him; he smiled BIG when Marshall and I held his hands and talked to him, frowning or looking solemn when we talked to one another. He fell asleep while we were in there.
Dr. Ordahl came in for Dr. Fennel. Brian's left lung is still problematic; the lower lobe still wants to collapse a bit. They will keep him off his left side. he also has thick secretions. This is from a combination of pneumonia, coma, and lack of movement. NOT from heart condition. So he needs to move around and keep coughing.
Dr. Sullivan is surprised at Brian's progress, as is everyone (except those closest to him, who know how strong he is!) He can't predict anything. Says in six months Brian should continue to progress, but there's no way of knowing if he can return to school. Dr. Solomon will determine the re-hab situation. Brian can't move out of ICU until his lungs and breathing are ok. He probably can't go to re-hab at Providence until he is functioning more independently. A nursing home would be the interim situation, where he can continue therapy AND recuperation. Dr. Sullivan's role is lessening now, since Brian is no longer in a neurological crisis.
Dr. Ordahl says the trach could be downsized as soon as Monday or Tuesday! I told Brian.
Alana is here. Kellie's brother Greg brought three HUGE balloons.
4:15 pm Brian is resting after suctioning, coughing and a heartrate that spiked up to 150 at one point. His heartrate was up around 110-115 anyway; Kellie said nurse thought it might be from rash on his bottom (??) He had PT today but we don't know about OT. Was definitely more tired this afternoon. David Voeller, Matt Shultz, Ben Carrier are here. Kellie and Marshall are gone.
10:10 pm I visited Brian with Ben, then David. Dave visited Brian with Matt. Brian was mostly quiet, though a bit animated with David, who talked to him the most. BIG smile for David, too. Suctioning at 5:45 while Dave and Matt there, so they left. Boys all left. Kellie and Marshall left at six and never returned. Dave and I left (not realizing they were gone) and I returned at 8:45. Brian very quiet. HR up to 112, down to 90. He still seems comforted by me, especially light hand stroking forehead. Nurse Bruce says left lung isn't collapsing, just not filling properly. No results of culture yet. Trazidone still for sleep. No trach downsize till lungs all clear. For re-hab, Brian must be able to endure whole day of therapy.
Jesse called.
10:15 am I spent an hour and a half with Brian this morning. He was very active, "running" his legs, trying to get his "space boots" off (They were to keep him feet from curling in), moving his arms, trying to get blood gas laser monitor off his right index finger. His right arm and hand are generally more active than his left; he clenches his left hand still more than his right (not surprising since he is right-handed). I told him to wiggle his fingers and he held up his right hand and wiggled the fingers, smiling. Brian likes it when people talk TO him, not around or about him; he smiled BIG when Marshall and I held his hands and talked to him, frowning or looking solemn when we talked to one another. He fell asleep while we were in there.
Dr. Ordahl came in for Dr. Fennel. Brian's left lung is still problematic; the lower lobe still wants to collapse a bit. They will keep him off his left side. he also has thick secretions. This is from a combination of pneumonia, coma, and lack of movement. NOT from heart condition. So he needs to move around and keep coughing.
Dr. Sullivan is surprised at Brian's progress, as is everyone (except those closest to him, who know how strong he is!) He can't predict anything. Says in six months Brian should continue to progress, but there's no way of knowing if he can return to school. Dr. Solomon will determine the re-hab situation. Brian can't move out of ICU until his lungs and breathing are ok. He probably can't go to re-hab at Providence until he is functioning more independently. A nursing home would be the interim situation, where he can continue therapy AND recuperation. Dr. Sullivan's role is lessening now, since Brian is no longer in a neurological crisis.
Dr. Ordahl says the trach could be downsized as soon as Monday or Tuesday! I told Brian.
Alana is here. Kellie's brother Greg brought three HUGE balloons.
4:15 pm Brian is resting after suctioning, coughing and a heartrate that spiked up to 150 at one point. His heartrate was up around 110-115 anyway; Kellie said nurse thought it might be from rash on his bottom (??) He had PT today but we don't know about OT. Was definitely more tired this afternoon. David Voeller, Matt Shultz, Ben Carrier are here. Kellie and Marshall are gone.
10:10 pm I visited Brian with Ben, then David. Dave visited Brian with Matt. Brian was mostly quiet, though a bit animated with David, who talked to him the most. BIG smile for David, too. Suctioning at 5:45 while Dave and Matt there, so they left. Boys all left. Kellie and Marshall left at six and never returned. Dave and I left (not realizing they were gone) and I returned at 8:45. Brian very quiet. HR up to 112, down to 90. He still seems comforted by me, especially light hand stroking forehead. Nurse Bruce says left lung isn't collapsing, just not filling properly. No results of culture yet. Trazidone still for sleep. No trach downsize till lungs all clear. For re-hab, Brian must be able to endure whole day of therapy.
Jesse called.
What a Fine Day
Friday 2 November 2001
10:20 am I was with Brian from 8 until a few minutes ago. he is awake and sitting in his chair, working with the OT Karen. Kellie came in about 9:45, and we washed his hair (Kellie did most of it while I held his hand and talked to him). It was fun and sweet; he liked it. We didn't comb his hair, leaving it naturally wavy. It is getting long, curly and reddish. (It used to be dark blond and straight!) Brian helped Nurse Susan brush his teeth! Whenever he spits, he looks at me for "permission"/reassurance. He will cough and spit for me - I tell him I am the cough and spit catcher! He inspected my earrings and necklace today - colorful beads. (He was curious like a very small child, and would inspect items of interest very closely, touching and examining them) I took out an earring for him to hold. He didn't seem to want to be read to, so I spent a lot of time with him letting him hold and squeeze my hand, smiling, looking around. He likes to move his body around. He also rubbed his nose, and reached for a washcloth to wipe his mouth when his teeth were brushed. He also reached to the back of his head when Kellie was washing his hair, to feel (and help?)
The nurse and I both talked to him about today's surgery, and she shaved his chest.
I brought in El Tigre - seemed like the right day for him. He will guard Brian's room. (This was the giant stuffed tiger)
1:50 pm Brian is going in for surgery now. Dave, Kellie and I stayed with him in pre-op till we had to leave. I held his hand and talked to him while they put in another IV in his right arm for quicker dispensation (quicker than PICC line). We even got a smile out of Brian, when I went back for one more kiss. He was confused and scared, but I tried to reassure him as best I could, and the presence of Dave and Kellie helped. He needed Mom. Now we wait.
10:35 pm Brian came through the surgery great. Dr. Martin came out at 4:20 to tell us Brian was waking up and everything went well. Dave and I got in to see him around 6 pm. Brian was wide awake, moving around, no post-surgery grogginess at all. Sara Golden and Darcie Baize (childhood friend) visited him; he was insecure at first, kept checking with me, but eventually relaxed and grinned. Tonight when Dave and I visited, Brian wanted my glasses, so I took them off and gave them to him. He put them on sort of upside-down, looking for approving smiles - which he got! (This was classic infant/toddler Brian; I have a photo of him in a pair of blue shades, with them upside-down on his face and a huge grin!) I need to find his shades. He was very active, moving his legs as though he was walking down the street, arms waving, hands grasping. He wanted us to help him take off the wires and the big tube that gives him O2 , and get him out of bed. We told him we'd like to but we couldn't . Dave told him that if he grabbed at things too much, his hands might get tied, and that seemed to calm Brian a bit. He was getting sleepy when I left him with Dave.
Thom and Alana visited.
Robin, Faye, Linda, Butch Filliger (Kellie's Mom), Rosemary, Merrikat called (Merrikat calls every morning).
What a relief to have the ICD installed! What a fine day for Brian.
10:20 am I was with Brian from 8 until a few minutes ago. he is awake and sitting in his chair, working with the OT Karen. Kellie came in about 9:45, and we washed his hair (Kellie did most of it while I held his hand and talked to him). It was fun and sweet; he liked it. We didn't comb his hair, leaving it naturally wavy. It is getting long, curly and reddish. (It used to be dark blond and straight!) Brian helped Nurse Susan brush his teeth! Whenever he spits, he looks at me for "permission"/reassurance. He will cough and spit for me - I tell him I am the cough and spit catcher! He inspected my earrings and necklace today - colorful beads. (He was curious like a very small child, and would inspect items of interest very closely, touching and examining them) I took out an earring for him to hold. He didn't seem to want to be read to, so I spent a lot of time with him letting him hold and squeeze my hand, smiling, looking around. He likes to move his body around. He also rubbed his nose, and reached for a washcloth to wipe his mouth when his teeth were brushed. He also reached to the back of his head when Kellie was washing his hair, to feel (and help?)
The nurse and I both talked to him about today's surgery, and she shaved his chest.
I brought in El Tigre - seemed like the right day for him. He will guard Brian's room. (This was the giant stuffed tiger)
1:50 pm Brian is going in for surgery now. Dave, Kellie and I stayed with him in pre-op till we had to leave. I held his hand and talked to him while they put in another IV in his right arm for quicker dispensation (quicker than PICC line). We even got a smile out of Brian, when I went back for one more kiss. He was confused and scared, but I tried to reassure him as best I could, and the presence of Dave and Kellie helped. He needed Mom. Now we wait.
10:35 pm Brian came through the surgery great. Dr. Martin came out at 4:20 to tell us Brian was waking up and everything went well. Dave and I got in to see him around 6 pm. Brian was wide awake, moving around, no post-surgery grogginess at all. Sara Golden and Darcie Baize (childhood friend) visited him; he was insecure at first, kept checking with me, but eventually relaxed and grinned. Tonight when Dave and I visited, Brian wanted my glasses, so I took them off and gave them to him. He put them on sort of upside-down, looking for approving smiles - which he got! (This was classic infant/toddler Brian; I have a photo of him in a pair of blue shades, with them upside-down on his face and a huge grin!) I need to find his shades. He was very active, moving his legs as though he was walking down the street, arms waving, hands grasping. He wanted us to help him take off the wires and the big tube that gives him O2 , and get him out of bed. We told him we'd like to but we couldn't . Dave told him that if he grabbed at things too much, his hands might get tied, and that seemed to calm Brian a bit. He was getting sleepy when I left him with Dave.
Thom and Alana visited.
Robin, Faye, Linda, Butch Filliger (Kellie's Mom), Rosemary, Merrikat called (Merrikat calls every morning).
What a relief to have the ICD installed! What a fine day for Brian.
Monday, November 5, 2012
A Busy Day
November 5, 2012
I needed to take a break from this, in light of a tragedy at the high school that affected me more than I expected. That coupled with the emotional drain of this blog caused me to hit a wall on Thursday and I just couldn't do it for a while.
Thursday 1 November 2001
1:20 pm Brian is more awake today. I have been in to see him several times, each time finding him more animated. Early this morning, he was more quiet, becoming more animated when the RT came in. He likes her; he needs silliness and activity. I am going to work on that. (I remember this day. She was really fun, and referred to herself as the "Respiratory Terrorist" because she was always stirring up trouble for him physically. He would turn from looking seriously at me, to smiling at her. He didn't seem to want to look at me at all. I was tired, too solemn, worn out from all the stress and worry. I wasn't sure how he was going to come out of all this and terrified that it would happen again, without warning, there in the hospital. It was nearly impossible for me to be playful. I cried that day, I felt so bad. I was jealous, too.) I read some of The BFG a couple times and he liked it, paid attention. The OT and a Speech Therapist came in and worked with him; the PT is with him now. The nurse (Crystal) turned the tv on, which I don't like, and I turned it off. I don't think he wanted it off; I think he was angry and said "on" to me. So I'll experiment. I just would rather interact with him. (Seemed fair. Plus, the rehab doc didn't want it on: too much stimuli) I showed him a painting Marshall brought in for him - one of Brian's - and Brian reached out and rubbed his left hand on it. I told him one day he would draw and paint again. (That took several years....)
He has a little electrode taped to his ring finger on his right hand, and wants it off. Hopefully, that will be done.
My friend Becky Becker called this afternoon, as did Jamie. (Becky is a friend from childhood)
I am here alone; Rosemary went home, Kellie and Marshall are working, and Dave went home for the day. Kellie is due 2-3 pm. I will go see Brian soon, so I can see him a while before Kellie gets here.
Marshall bought photo albums and I put all Brian's Europe photos in them. Dr. Foster came in this morning. No time on the surgery tomorrow; I must check.
6:35 pm Surgery will be 2 pm tomorrow. It will run approximately two hours. Ahsa, Bubby, and Vanessa visited. Brian was so excited when they came in; his eyes and grin were HUGE. Vanessa brought Day of the Dead suckers and Brian recognized them. Bubby had a drawing/cartoon of Brian's in a notebook, and Brian traced parts of it with his finger. He was being goofy, chewing on the leg of his Josie puppy, to peals of laughter from the girls. It was delightful!!!! Friends are the KEY.
Told nurses NO tv (and no experiments).
8:40 pm Max, Max Jacobsen-Freid (a friend of Brian's since grade school), Alana, and Josh Romberg (high school friend) all visited Brian together. It went great, happy kids all. Bubby's dad, Phil, also visited earlier; he took care of Brian in Ashland Hospital (and later did an amazing job stitching up Brian's nose in the ER after a dog bit him the following March). Marshall is with Brian now, saying "good night". Kellie and I will be here tomorrow morning. Thom will come in mid-afternoon and Dave will be here.
Marshall showed brian the Europe photo albums. Brian turned pages and pointed to photos. Nurse Crystal asked Brian at one point if he wanted to get in his chair and he mouthed "No".
10:30 pm I was with Brian most of an hour. No vent: it was taken out of the room while I was there. Brian looked at it and smiled at me when I told him he wouldn't need it because he was breathing well enough on his own. I read a chapter The BFG and Brian fell asleep.
Watched video on implantable cardioverter defibrillator (in the room at Cheney House).
I needed to take a break from this, in light of a tragedy at the high school that affected me more than I expected. That coupled with the emotional drain of this blog caused me to hit a wall on Thursday and I just couldn't do it for a while.
Thursday 1 November 2001
1:20 pm Brian is more awake today. I have been in to see him several times, each time finding him more animated. Early this morning, he was more quiet, becoming more animated when the RT came in. He likes her; he needs silliness and activity. I am going to work on that. (I remember this day. She was really fun, and referred to herself as the "Respiratory Terrorist" because she was always stirring up trouble for him physically. He would turn from looking seriously at me, to smiling at her. He didn't seem to want to look at me at all. I was tired, too solemn, worn out from all the stress and worry. I wasn't sure how he was going to come out of all this and terrified that it would happen again, without warning, there in the hospital. It was nearly impossible for me to be playful. I cried that day, I felt so bad. I was jealous, too.) I read some of The BFG a couple times and he liked it, paid attention. The OT and a Speech Therapist came in and worked with him; the PT is with him now. The nurse (Crystal) turned the tv on, which I don't like, and I turned it off. I don't think he wanted it off; I think he was angry and said "on" to me. So I'll experiment. I just would rather interact with him. (Seemed fair. Plus, the rehab doc didn't want it on: too much stimuli) I showed him a painting Marshall brought in for him - one of Brian's - and Brian reached out and rubbed his left hand on it. I told him one day he would draw and paint again. (That took several years....)
He has a little electrode taped to his ring finger on his right hand, and wants it off. Hopefully, that will be done.
My friend Becky Becker called this afternoon, as did Jamie. (Becky is a friend from childhood)
I am here alone; Rosemary went home, Kellie and Marshall are working, and Dave went home for the day. Kellie is due 2-3 pm. I will go see Brian soon, so I can see him a while before Kellie gets here.
Marshall bought photo albums and I put all Brian's Europe photos in them. Dr. Foster came in this morning. No time on the surgery tomorrow; I must check.
6:35 pm Surgery will be 2 pm tomorrow. It will run approximately two hours. Ahsa, Bubby, and Vanessa visited. Brian was so excited when they came in; his eyes and grin were HUGE. Vanessa brought Day of the Dead suckers and Brian recognized them. Bubby had a drawing/cartoon of Brian's in a notebook, and Brian traced parts of it with his finger. He was being goofy, chewing on the leg of his Josie puppy, to peals of laughter from the girls. It was delightful!!!! Friends are the KEY.
Told nurses NO tv (and no experiments).
8:40 pm Max, Max Jacobsen-Freid (a friend of Brian's since grade school), Alana, and Josh Romberg (high school friend) all visited Brian together. It went great, happy kids all. Bubby's dad, Phil, also visited earlier; he took care of Brian in Ashland Hospital (and later did an amazing job stitching up Brian's nose in the ER after a dog bit him the following March). Marshall is with Brian now, saying "good night". Kellie and I will be here tomorrow morning. Thom will come in mid-afternoon and Dave will be here.
Marshall showed brian the Europe photo albums. Brian turned pages and pointed to photos. Nurse Crystal asked Brian at one point if he wanted to get in his chair and he mouthed "No".
10:30 pm I was with Brian most of an hour. No vent: it was taken out of the room while I was there. Brian looked at it and smiled at me when I told him he wouldn't need it because he was breathing well enough on his own. I read a chapter The BFG and Brian fell asleep.
Watched video on implantable cardioverter defibrillator (in the room at Cheney House).
Wednesday, October 31, 2012
Secure and Peaceful
Wednesday 31 October 2001 Halloween
8:15 am Brian is sound asleep, so I am just sitting in his room. I will do calendar, etc, later. He is pale in the morning light.
Slept well. Is on and anti-depressant called trazidone as of Monday night. Current HR is 85. He is breathing on his own and O2 sat is 95%. Still getting humidified O2 at 40% (it has been varying 30-40%).
It is wonderful to know that he is in a real sleep, not a coma-sleep.
X-rays indicate left lung is finally open. Fennel wants one more night on vent. Could move to 3 West floor or elsewhere early next week!
10:45 am Spent 2 hours with Brian. Marshall came in. We helped Nurse Kathy move him into chair. He is still sleepy, not much interaction. I washed his face a bit, massaged Vitamin E lotion into his hands and feet. The foot massage put him back to sleep.
Dr. David Marin came in to discuss de-fibrillator. Very compassionate, gentle man - another tall, skinny, competent , intelligent cardiac doctor. He wants to put in de-fibrillator tomorrow or Friday. Will be done in OR, with anesthesia through trach. Insert under skin on left side of upper chest. Wire (like narrow feeding tube)goes through vein into heart. To test it they must fibrillate heart: 1% chance of mortality, because hypertrophic myopathic hearts "notoriously difficult to fibrillate". Other wise, should be safe, easy, and protective. Martin asked a lot of questions about Brian's current condition, and expressed concerns that B can't participate in decision. Bottom line is that Brian wants as normal a life as possible, and this device can save his life. Foster & Martin think Providence Rehab next week.
OT Karen came in at ten, so Marshall and I left. Brian was till trying to doze. Karen was going to brush his teeth. She works with him 30 minutes. Said the usual procedure with rehan is to set up a very strict daily schedule.
Merrikat and Jamie called. Jesse is doing better; life getting more normal.
2:35 pm I went in to see Brian again close to noon. Stayed an hour. He was still in chair, didn't seem to want company until I indicated I'd leave if he didn't want me there. Then he became very engaged, looking at me, trying to talk, holding my hand. Still tired. I showed him calendar, with dates written in. Pointed out Homecoming (October 6th), the day we saw Marilyn Zornado's film (October 7th), the day of the attack (6,7,8). I showed him all the days between then and today, and he looked disturbed at the vast space. I explained that it looked like a long time, but that he'd been working hard and getting better.
The RT was talking about her daughter in Spain, and Brian watched intently. I mentioned that he had gone to Spain this summer and he looked at me, eyes wide, as I said, "Remember Barcelona, Madrid, the Prado, the beautiful box you brought me?" Definite recognition - I try often to issue forth memories, from the recent and far past.
(He never has remembered Spain, or anything about that trip except perhaps the girl he met)
I helped Kathy and another nurse move Brian back into bed. He was a little scared, because we moved him quickly, but settled easily. I put on a cd of Beethoven and he nodded right off. Secure and peaceful.
Brian is getting thin. Bones protruding.
10:50 pm Brian hugged Dave and mouthed "Alana" tonight. He was tired all day, slept a lot. Hugged Marshall goodnight. Was very subdued when I went in to say "goodnight". We held hands and stared into one another's eyes. I stroked his head gently. When I told him he could close his eyes and sleep, he did.
He looked gaunt and hollow-eyed tonight.
De-fibrillator Friday morning. I hope he's strong enough.
HR 69-70 tonight. On vent, w/30% O2. Dave is with him.
Jamie called; we talked 30 minutes.
Mary and Ali visited.
Faye called. I called Leinani (Greensprings friend).
October 31, 2012
Time was a puzzlement to Brian for quite a while. It still is, actually.
The de-fib surgery scared me. It still does; he has had it replaced twice. Another one is due in a year or so.
8:15 am Brian is sound asleep, so I am just sitting in his room. I will do calendar, etc, later. He is pale in the morning light.
Slept well. Is on and anti-depressant called trazidone as of Monday night. Current HR is 85. He is breathing on his own and O2 sat is 95%. Still getting humidified O2 at 40% (it has been varying 30-40%).
It is wonderful to know that he is in a real sleep, not a coma-sleep.
X-rays indicate left lung is finally open. Fennel wants one more night on vent. Could move to 3 West floor or elsewhere early next week!
10:45 am Spent 2 hours with Brian. Marshall came in. We helped Nurse Kathy move him into chair. He is still sleepy, not much interaction. I washed his face a bit, massaged Vitamin E lotion into his hands and feet. The foot massage put him back to sleep.
Dr. David Marin came in to discuss de-fibrillator. Very compassionate, gentle man - another tall, skinny, competent , intelligent cardiac doctor. He wants to put in de-fibrillator tomorrow or Friday. Will be done in OR, with anesthesia through trach. Insert under skin on left side of upper chest. Wire (like narrow feeding tube)goes through vein into heart. To test it they must fibrillate heart: 1% chance of mortality, because hypertrophic myopathic hearts "notoriously difficult to fibrillate". Other wise, should be safe, easy, and protective. Martin asked a lot of questions about Brian's current condition, and expressed concerns that B can't participate in decision. Bottom line is that Brian wants as normal a life as possible, and this device can save his life. Foster & Martin think Providence Rehab next week.
OT Karen came in at ten, so Marshall and I left. Brian was till trying to doze. Karen was going to brush his teeth. She works with him 30 minutes. Said the usual procedure with rehan is to set up a very strict daily schedule.
Merrikat and Jamie called. Jesse is doing better; life getting more normal.
2:35 pm I went in to see Brian again close to noon. Stayed an hour. He was still in chair, didn't seem to want company until I indicated I'd leave if he didn't want me there. Then he became very engaged, looking at me, trying to talk, holding my hand. Still tired. I showed him calendar, with dates written in. Pointed out Homecoming (October 6th), the day we saw Marilyn Zornado's film (October 7th), the day of the attack (6,7,8). I showed him all the days between then and today, and he looked disturbed at the vast space. I explained that it looked like a long time, but that he'd been working hard and getting better.
The RT was talking about her daughter in Spain, and Brian watched intently. I mentioned that he had gone to Spain this summer and he looked at me, eyes wide, as I said, "Remember Barcelona, Madrid, the Prado, the beautiful box you brought me?" Definite recognition - I try often to issue forth memories, from the recent and far past.
(He never has remembered Spain, or anything about that trip except perhaps the girl he met)
I helped Kathy and another nurse move Brian back into bed. He was a little scared, because we moved him quickly, but settled easily. I put on a cd of Beethoven and he nodded right off. Secure and peaceful.
Brian is getting thin. Bones protruding.
10:50 pm Brian hugged Dave and mouthed "Alana" tonight. He was tired all day, slept a lot. Hugged Marshall goodnight. Was very subdued when I went in to say "goodnight". We held hands and stared into one another's eyes. I stroked his head gently. When I told him he could close his eyes and sleep, he did.
He looked gaunt and hollow-eyed tonight.
De-fibrillator Friday morning. I hope he's strong enough.
HR 69-70 tonight. On vent, w/30% O2. Dave is with him.
Jamie called; we talked 30 minutes.
Mary and Ali visited.
Faye called. I called Leinani (Greensprings friend).
October 31, 2012
Time was a puzzlement to Brian for quite a while. It still is, actually.
The de-fib surgery scared me. It still does; he has had it replaced twice. Another one is due in a year or so.
Awareness, Communication, Touch
Tuesday 30 October 2001
7:15 am Brian's night continued as when I left, although heartrate kept going into 100s. When Dave and Bruce turned him, they discovered a pool of "food" under him. A possible source of discomfort and thus high heartrate? Something to check regularly, as the tube has been pulling out of the port often, since he started moving more. Slept with hands curled up by his face. Seems to be figuring out how to swallow instead of gag.
(The "food" was the green mixture they fed him through the PEG tube in his belly. We called it "Soylent Green" after the movie of the same name)
10:45 am Spent 2 1/2 hours with Brian, most of it with him in his chair. Helped Nurse Kathy put him in chair, too. He was very active, lifting and waving arms, reaching for monitor (which he stared at a lot first; I explained it to him). Kellie brought in a soft stuffed puppy that looks like her dog, Josie, and Brian smiled when she showed it to him and described it. We held his hands and talked to him. Left puppy in his lap. I spent time alone with him, which is when he started getting very animated. Rubbed his nose twice with right hand, as though to alleviate itch. Explored my hands and arms with his hands. Touched his own chin and reached around to feel the back of his neck and head, then mine (all with right hand). Touched my face several times. Smiles and many attempts to talk. Trying to teach him to nod and shake his head. Will open mouth now upon request. Squeezed Dr. Fennel's hand upon request, and let go of mine when asked. Rosemary with me, with him, till OT Karen came near 10:30. He held both our hands, moved around. Very active! Some quivering in legs with increased activity. Toes spreading, too. HR goes up a bit, 110-120 sometimes - but goes down. Dr. Foster says Dr. Martin (Cardio surgeon) will be in in next couple days and will put in de-fibrillator. Explained to Brian a little. (Looking out) Facing window while in chair. Spam visited and was amazed at news (hadn't talked to her in a while!) She hasn't seen him yet. (Spam and Brian became great friends later) MK called. Brian pointed at/gestured towards drawings and photos of him on wall. Very interested in them.
(Brian was re-entering the world, as an infant would, re-learning how to use his body. Everything was new again, including language)
10:30 pm New schedule beginning: Dave will be with Brian till midnight, then come back
here. (Cheney House) I will get up in morning and spend most of day at hospital with Brian - or as much as I can, given his schedule, other visitors. Eventually, Dave will be on days,too. This will be better for Brian, us, Marshall and Kellie. Thom Little has offered regular help, too; he is healthy and visited tonight. (Thom had the flu, or maybe pneumonia)
Brian is worn out from a busy day. In chair 4 hours or so (too much?) and had school visitors this afternoon/evening: Alana, Matt, Vanessa, Bubby. This evening he hugged Marshall! Tonight he mouthed "Mom" (he was in distress, holding my hand) and "I love you" after I did it (said it). he wants to talk very much, and is distressed that he can't.
Tomorrow I will bring in calendar and dry erase board. I will start by showing him October.
7:15 am Brian's night continued as when I left, although heartrate kept going into 100s. When Dave and Bruce turned him, they discovered a pool of "food" under him. A possible source of discomfort and thus high heartrate? Something to check regularly, as the tube has been pulling out of the port often, since he started moving more. Slept with hands curled up by his face. Seems to be figuring out how to swallow instead of gag.
(The "food" was the green mixture they fed him through the PEG tube in his belly. We called it "Soylent Green" after the movie of the same name)
10:45 am Spent 2 1/2 hours with Brian, most of it with him in his chair. Helped Nurse Kathy put him in chair, too. He was very active, lifting and waving arms, reaching for monitor (which he stared at a lot first; I explained it to him). Kellie brought in a soft stuffed puppy that looks like her dog, Josie, and Brian smiled when she showed it to him and described it. We held his hands and talked to him. Left puppy in his lap. I spent time alone with him, which is when he started getting very animated. Rubbed his nose twice with right hand, as though to alleviate itch. Explored my hands and arms with his hands. Touched his own chin and reached around to feel the back of his neck and head, then mine (all with right hand). Touched my face several times. Smiles and many attempts to talk. Trying to teach him to nod and shake his head. Will open mouth now upon request. Squeezed Dr. Fennel's hand upon request, and let go of mine when asked. Rosemary with me, with him, till OT Karen came near 10:30. He held both our hands, moved around. Very active! Some quivering in legs with increased activity. Toes spreading, too. HR goes up a bit, 110-120 sometimes - but goes down. Dr. Foster says Dr. Martin (Cardio surgeon) will be in in next couple days and will put in de-fibrillator. Explained to Brian a little. (Looking out) Facing window while in chair. Spam visited and was amazed at news (hadn't talked to her in a while!) She hasn't seen him yet. (Spam and Brian became great friends later) MK called. Brian pointed at/gestured towards drawings and photos of him on wall. Very interested in them.
(Brian was re-entering the world, as an infant would, re-learning how to use his body. Everything was new again, including language)
10:30 pm New schedule beginning: Dave will be with Brian till midnight, then come back
here. (Cheney House) I will get up in morning and spend most of day at hospital with Brian - or as much as I can, given his schedule, other visitors. Eventually, Dave will be on days,too. This will be better for Brian, us, Marshall and Kellie. Thom Little has offered regular help, too; he is healthy and visited tonight. (Thom had the flu, or maybe pneumonia)
Brian is worn out from a busy day. In chair 4 hours or so (too much?) and had school visitors this afternoon/evening: Alana, Matt, Vanessa, Bubby. This evening he hugged Marshall! Tonight he mouthed "Mom" (he was in distress, holding my hand) and "I love you" after I did it (said it). he wants to talk very much, and is distressed that he can't.
Tomorrow I will bring in calendar and dry erase board. I will start by showing him October.
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