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.
Wednesday, October 31, 2012
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.
Monday, October 29, 2012
Blessings After Three Weeks
October 29, 2012
This is a cathartic process. I find myself reliving the feelings and almost dwelling in that world of 11 years ago. I am dreaming about Brian as a small child. Just before he awoke, I dreamed I birthed him again. It's like that. I am immersed, in pain and process and wonder and loss. I am also realizing how far he has come.
Monday 29 October 2001
7:26 am Brian had a quiet night. More apneas (had several while I was there) - from morphine AND Resterol (sleeping med?) First truly incompetent, unpleasant nurse last night, Marianne. We will make sure she does not return. (She didn't; we fired her from Brian care)
9:45 am No more problems over last night's nurse. Jamie and Merrikat called. Dr. Fennel said apnea caused by Brian and respirator: He stops working so hard. Will be on different sleep med tonight. He is only given morphine (3 mg) when very agitated, especially (specifically?) after gagging incidents (caused by build-up of saliva atop trach tube). There will be no more tv for time being. Marshall suggested Lord of the Rings, which Brian had talked about reading this fall (I remember, too). I may switch to The BFG from The Witches: nicer story.
Amantadine will be increased to 2x daily. Dr. Sullivan VERY pleased. Fennel thinks B will be out of ICU in 1-2 weeks. Then: Rehab at Providence? Nursing facility?
7:10 pm Dave and I visited Brian together this afternoon. It was also an opportunity for Dave to meet Penny the BEST NURSE. Brian was awake and alert. He spent time in his chair today. he is on a physical/occupational therapy schedule: 10 am and 1 pm, with time afterwards to rest. Penny said Brian was definitely trying to talk to her today. The trach tube will be downsized soon, to a point where it can be plugged or capped temporarily and he can talk. It won't be removed until he is breathing deeply enough to get enough O2. He had no fever for 24+ hours, has been off antibiotics for a few days (blood infection was probably just skin staph; didn't show again). Last night heart rate was down to 60s, high 50s, which was lower than they wanted. Will be on a different sleep med tonight, and will be off one anti-seizure med. Dr. Foster wants to put in de-fibrillator ASAP.
Penny encourages us to start coming in during the day. It seems important for me to start doing so, ASAP. Dave and I will begin adjusting; he may stay on nights for a while.
Laurel visited. Alana visited. Rosemary is back. Eileen called this evening. (My cousin in California). Tony visited us at Cheney House when we were asleep.
9:40 pm In room with Brian. He is starting to fall asleep: got sleep meds about 20 minutes ago. Nurse Bruce is changing trach dressing. Brian had brief gagging episode w/body shakes; Bruce gave him ativan (seizure med). Heartrate upper 80s - low 90s. On vent for night so he doesn't have to work so hard: 1 assist, 40% O2 . He isn't smiling at me like he was, but I seem to be a comfort. Jamie called tonight.
I will leave early if Brian seems to be sleeping deeply, calmly. More sleep so I can be here during the day.
12:10 am Very peaceful, sleeping young man. Moments of eye opening & staring, lifting arms and smiling or grimacing: checking things out, dreaming, semi-waking? Spoke to him briefly when eyes open - no response, except to close eyes, eventually doze. Heart went up past 100, then back down to 80s,quickly. Left him quietly with Dave. Most peaceful night I've seen.
October 29, 2012
That horrid nurse! I was furious. She would not let me near my son, would stand in front of me to bar my way. When Dave came on that night, I told him and he got rid of her.
All the medical terminology and observations of equipment became second nature. We paid as much attention to the monitors as the nurses and doctors did. The after effects for me are that I cannot even watch a film of some one in ICU without getting upset. It doesn't even have to be real. And I HATE hospitals. This is despite the wonderful care Brian received. It's the association with all that pain and stress. I don't know if it will ever change. When I visit someone, it's all I can do to remain calm. Dear friends, if you are ever in hospital and I don't visit, please understand!
Dave and I started switching to days at this point, especially me.
Tony Henthorn was the wonderful guy Dave was working construction with when all this started. Tony had just that summer had a wall fall on him and HE was in ICU. He was another walking miracle. Dave and Tony worked together again later, when we were settled in Ashland with Brian.
All these wonderful people. Makes me cry with grateful tears. Bless you all. Nurse Penny too, wherever you are!
This is a cathartic process. I find myself reliving the feelings and almost dwelling in that world of 11 years ago. I am dreaming about Brian as a small child. Just before he awoke, I dreamed I birthed him again. It's like that. I am immersed, in pain and process and wonder and loss. I am also realizing how far he has come.
Monday 29 October 2001
7:26 am Brian had a quiet night. More apneas (had several while I was there) - from morphine AND Resterol (sleeping med?) First truly incompetent, unpleasant nurse last night, Marianne. We will make sure she does not return. (She didn't; we fired her from Brian care)
9:45 am No more problems over last night's nurse. Jamie and Merrikat called. Dr. Fennel said apnea caused by Brian and respirator: He stops working so hard. Will be on different sleep med tonight. He is only given morphine (3 mg) when very agitated, especially (specifically?) after gagging incidents (caused by build-up of saliva atop trach tube). There will be no more tv for time being. Marshall suggested Lord of the Rings, which Brian had talked about reading this fall (I remember, too). I may switch to The BFG from The Witches: nicer story.
Amantadine will be increased to 2x daily. Dr. Sullivan VERY pleased. Fennel thinks B will be out of ICU in 1-2 weeks. Then: Rehab at Providence? Nursing facility?
7:10 pm Dave and I visited Brian together this afternoon. It was also an opportunity for Dave to meet Penny the BEST NURSE. Brian was awake and alert. He spent time in his chair today. he is on a physical/occupational therapy schedule: 10 am and 1 pm, with time afterwards to rest. Penny said Brian was definitely trying to talk to her today. The trach tube will be downsized soon, to a point where it can be plugged or capped temporarily and he can talk. It won't be removed until he is breathing deeply enough to get enough O2. He had no fever for 24+ hours, has been off antibiotics for a few days (blood infection was probably just skin staph; didn't show again). Last night heart rate was down to 60s, high 50s, which was lower than they wanted. Will be on a different sleep med tonight, and will be off one anti-seizure med. Dr. Foster wants to put in de-fibrillator ASAP.
Penny encourages us to start coming in during the day. It seems important for me to start doing so, ASAP. Dave and I will begin adjusting; he may stay on nights for a while.
Laurel visited. Alana visited. Rosemary is back. Eileen called this evening. (My cousin in California). Tony visited us at Cheney House when we were asleep.
9:40 pm In room with Brian. He is starting to fall asleep: got sleep meds about 20 minutes ago. Nurse Bruce is changing trach dressing. Brian had brief gagging episode w/body shakes; Bruce gave him ativan (seizure med). Heartrate upper 80s - low 90s. On vent for night so he doesn't have to work so hard: 1 assist, 40% O2 . He isn't smiling at me like he was, but I seem to be a comfort. Jamie called tonight.
I will leave early if Brian seems to be sleeping deeply, calmly. More sleep so I can be here during the day.
12:10 am Very peaceful, sleeping young man. Moments of eye opening & staring, lifting arms and smiling or grimacing: checking things out, dreaming, semi-waking? Spoke to him briefly when eyes open - no response, except to close eyes, eventually doze. Heart went up past 100, then back down to 80s,quickly. Left him quietly with Dave. Most peaceful night I've seen.
October 29, 2012
That horrid nurse! I was furious. She would not let me near my son, would stand in front of me to bar my way. When Dave came on that night, I told him and he got rid of her.
All the medical terminology and observations of equipment became second nature. We paid as much attention to the monitors as the nurses and doctors did. The after effects for me are that I cannot even watch a film of some one in ICU without getting upset. It doesn't even have to be real. And I HATE hospitals. This is despite the wonderful care Brian received. It's the association with all that pain and stress. I don't know if it will ever change. When I visit someone, it's all I can do to remain calm. Dear friends, if you are ever in hospital and I don't visit, please understand!
Dave and I started switching to days at this point, especially me.
Tony Henthorn was the wonderful guy Dave was working construction with when all this started. Tony had just that summer had a wall fall on him and HE was in ICU. He was another walking miracle. Dave and Tony worked together again later, when we were settled in Ashland with Brian.
All these wonderful people. Makes me cry with grateful tears. Bless you all. Nurse Penny too, wherever you are!
Sunday, October 28, 2012
Surfacing
Sunday 28 October 2001
12:31 pm Jesse and Jamie were with Brian last night. Marc was there, too. Brian is so sensitive to people that he had trouble sleeping and the nurse had everyone leave. Brian got about four solid hours of sleep. He would awaken if a person holding his hand would let go. Jamie said it seemed like he didn't want people to leave. She and Jesse explained where Dave and I were. This morning Brian was tired from yesterday's activities. Jesse said it was more like real fatigue, not like the coma spaciness. Nurse Penny still wants to get Brian into the chair today, which is good. Alana read Goodnight Moon to Brian last night!
12:25 am Brian had a quiet day - he was tired. He sat in his chair some. Dr. Fennel ordered a sleeping med for nights, and no visitors - or at least no touching, so B can sleep. He had a gagging incident and tried to reach for trach. Spit out gunk instead of swallowing or allowing suction. And wiped face with right hand! Slept hour or so, then woke again, close to midnight, agitated. Nurse Deborah let him watch "The Simpsons", and I read a chapter of The Witches. More serious today.
October 28, 2012
This was the first extensive absence for Dave and I. I believe we went home to the Greensprings.
The agitation continued for several weeks, through rehab and beyond. It was a combination of awakening and drugs. Everything was firing again, with no real control. He was hyper-sensitive and definitely did NOT want to be alone. The non-touching did not last very long; it was totally against my instincts and it caused Brian a great deal of distress. Imagine not touching your newborn! That's what it was like. After all that time of working to help wake him, touching and making sure he knew we were there, I was not going to stop. We did try hard not to wake him when he slept, but any sound or movement could do it.
Somewhere I have a calendar with notations that may include the books I read to him, and when. I will find this to supplement. I have other things I will begin inserting, as well. The journal entries end at this point, as I concentrated on the hospital diary.
Brian was re-learning how to breathe, be awake, sleep normally. He was no longer under water. He was truly surfacing.
12:31 pm Jesse and Jamie were with Brian last night. Marc was there, too. Brian is so sensitive to people that he had trouble sleeping and the nurse had everyone leave. Brian got about four solid hours of sleep. He would awaken if a person holding his hand would let go. Jamie said it seemed like he didn't want people to leave. She and Jesse explained where Dave and I were. This morning Brian was tired from yesterday's activities. Jesse said it was more like real fatigue, not like the coma spaciness. Nurse Penny still wants to get Brian into the chair today, which is good. Alana read Goodnight Moon to Brian last night!
12:25 am Brian had a quiet day - he was tired. He sat in his chair some. Dr. Fennel ordered a sleeping med for nights, and no visitors - or at least no touching, so B can sleep. He had a gagging incident and tried to reach for trach. Spit out gunk instead of swallowing or allowing suction. And wiped face with right hand! Slept hour or so, then woke again, close to midnight, agitated. Nurse Deborah let him watch "The Simpsons", and I read a chapter of The Witches. More serious today.
October 28, 2012
This was the first extensive absence for Dave and I. I believe we went home to the Greensprings.
The agitation continued for several weeks, through rehab and beyond. It was a combination of awakening and drugs. Everything was firing again, with no real control. He was hyper-sensitive and definitely did NOT want to be alone. The non-touching did not last very long; it was totally against my instincts and it caused Brian a great deal of distress. Imagine not touching your newborn! That's what it was like. After all that time of working to help wake him, touching and making sure he knew we were there, I was not going to stop. We did try hard not to wake him when he slept, but any sound or movement could do it.
Somewhere I have a calendar with notations that may include the books I read to him, and when. I will find this to supplement. I have other things I will begin inserting, as well. The journal entries end at this point, as I concentrated on the hospital diary.
Brian was re-learning how to breathe, be awake, sleep normally. He was no longer under water. He was truly surfacing.
Saturday, October 27, 2012
The Gift of Awareness
Saturday 27 October 2001
8:40 am Brian smiled at me as I walked in the room this morning, and continued smiling as I greeted and kissed him. Later he gripped my hand. When Nurse Penny spoke to him, he looked at her urgently and wanted to talk, straining, creasing brow, opening mouth.
9:30 am Dr. Fennel examined Brian, then I went back. Brian is very responsive to me, with eyes, facial expression. Doesn't seem to want me to leave. Gave Jamie a big grin when he saw her. She and Marshall came in, Jesse followed when I left to nap.
All numbers were good. Coughing well, though RT and nurse can hear stuff in lungs. Off vent all night. Fennel wants him back on if working too hard. Brian will get to sit in the chair again, this morning and afternoon, hopefully. // Brian sat in the chair for five hours. I didn't get to see him, but apparently he really liked it. Still lots of movement, trying to sit up, lifting arms smiles. He had lots of visitors during the day, including Uncle Mike and Jessica Erikson. Penny got him to open his mouth -"Open your mouth, Brian!" - and brushed his teeth. I visited in the afternoon and he was a bit tired but peaceful. We spend a lot of time just looking into one another's eyes. He reaches his arms for me, too, trying to touch, maybe hug.
In the evening he had a bad coughing fit and started gagging, so he was given some morphine. Jamie offered to stay with him at night, so Dave and i could go home and sleep, so when I went in to say "Good Night" at 8:30, he was weary. But he looked at me all the time I was there talking to him and stroking his head.
He is improving hugely.
Smiles are similar to a baby's, but he is PRESENT and understanding much of what is going on.
When Alana wanted to leave, he wouldn't let go of her hand. He has gripped mine like that, too.
8:40 am Brian smiled at me as I walked in the room this morning, and continued smiling as I greeted and kissed him. Later he gripped my hand. When Nurse Penny spoke to him, he looked at her urgently and wanted to talk, straining, creasing brow, opening mouth.
9:30 am Dr. Fennel examined Brian, then I went back. Brian is very responsive to me, with eyes, facial expression. Doesn't seem to want me to leave. Gave Jamie a big grin when he saw her. She and Marshall came in, Jesse followed when I left to nap.
All numbers were good. Coughing well, though RT and nurse can hear stuff in lungs. Off vent all night. Fennel wants him back on if working too hard. Brian will get to sit in the chair again, this morning and afternoon, hopefully. // Brian sat in the chair for five hours. I didn't get to see him, but apparently he really liked it. Still lots of movement, trying to sit up, lifting arms smiles. He had lots of visitors during the day, including Uncle Mike and Jessica Erikson. Penny got him to open his mouth -"Open your mouth, Brian!" - and brushed his teeth. I visited in the afternoon and he was a bit tired but peaceful. We spend a lot of time just looking into one another's eyes. He reaches his arms for me, too, trying to touch, maybe hug.
In the evening he had a bad coughing fit and started gagging, so he was given some morphine. Jamie offered to stay with him at night, so Dave and i could go home and sleep, so when I went in to say "Good Night" at 8:30, he was weary. But he looked at me all the time I was there talking to him and stroking his head.
He is improving hugely.
Smiles are similar to a baby's, but he is PRESENT and understanding much of what is going on.
When Alana wanted to leave, he wouldn't let go of her hand. He has gripped mine like that, too.
Such a Day
Friday 26 October 2001
7:32 am Another couple of big coughing fits in the night. After one, when Dave was there, Brian's legs went into spasms (lower body). Nurse Ida gave Brian ativan instead of morphine: he seemed to be anxious, not in pain. RT Scott suctioned back of throat because B seems to be reluctant to swallow.
9:05 pm Jesse and Jamie just left with Kellie.
Brian had pphysical and occupational therapy today. His PT is Cindy; she worked his legs this morning. He sat in the "Cadillac Chair" twice today. (A very elaborate wheel chair) This morning he was with Marshall and I, and got to look out the window. This afternoon he tried to sit up higher in the chair by himself (it's tilted at 40 degrees). ( At this time, Brian was still very floppy, with no muscle tone to speak of. He was also frighteningly skinny, with bones protruding everywhere) Brian smiled at Jesse, and Jesse and Jamie think (as do I) that he is trying to speak. When Jesse and Jamie saw him before they left, he was asleep. Foster told me this morning that Brian has a bacterial infection in his blood, which will be treated aggressively with a new round of antibiotics.
12:30 am (10-27-01) BRIAN SMILED AT ME!!! I walked in the room at 7:30. He was staring at his Pink Floyd banner. I said, "Hi Brian, it's Mom", he turned to me, and gave me a big, closed-mouth smile! His whole face lit up, eyes sparkling. We sat and smiled at one another for a long time, and did it several more times before about 11:30, when he was tired and ready to sleep. I cried many happy tears. He was alert quite a bit, looking around, trying to sit up, lifting his arms. Sometimes he looked angry; other times I knew he was trying to talk. As always, I explained about his vocal chords. And I told him his hands were tied to keep him safe.
Heartrate in 80s mostly. Breathing ENTIRELY on his own, w/35% humidified O2 . Coughing well, on his own.
Chris (Newton - school friend) and Max visited late (saw Brian). Marc and Alana there, along with Dave.
Barb and Dave due tonight (my Dave's sister and her husband).
A Mother's Words (my journal)
BRIAN SMILED AT ME, for long stretches, many times tonight!
We smiled together and I cried happy tears!
Such a day.
Brian's first night off the ventilator. And he was up in a special chair, the "Cadillac Chair", twice today! (Friday)
Saturday 10-27-01 12:40 am
7:32 am Another couple of big coughing fits in the night. After one, when Dave was there, Brian's legs went into spasms (lower body). Nurse Ida gave Brian ativan instead of morphine: he seemed to be anxious, not in pain. RT Scott suctioned back of throat because B seems to be reluctant to swallow.
9:05 pm Jesse and Jamie just left with Kellie.
Brian had pphysical and occupational therapy today. His PT is Cindy; she worked his legs this morning. He sat in the "Cadillac Chair" twice today. (A very elaborate wheel chair) This morning he was with Marshall and I, and got to look out the window. This afternoon he tried to sit up higher in the chair by himself (it's tilted at 40 degrees). ( At this time, Brian was still very floppy, with no muscle tone to speak of. He was also frighteningly skinny, with bones protruding everywhere) Brian smiled at Jesse, and Jesse and Jamie think (as do I) that he is trying to speak. When Jesse and Jamie saw him before they left, he was asleep. Foster told me this morning that Brian has a bacterial infection in his blood, which will be treated aggressively with a new round of antibiotics.
12:30 am (10-27-01) BRIAN SMILED AT ME!!! I walked in the room at 7:30. He was staring at his Pink Floyd banner. I said, "Hi Brian, it's Mom", he turned to me, and gave me a big, closed-mouth smile! His whole face lit up, eyes sparkling. We sat and smiled at one another for a long time, and did it several more times before about 11:30, when he was tired and ready to sleep. I cried many happy tears. He was alert quite a bit, looking around, trying to sit up, lifting his arms. Sometimes he looked angry; other times I knew he was trying to talk. As always, I explained about his vocal chords. And I told him his hands were tied to keep him safe.
Heartrate in 80s mostly. Breathing ENTIRELY on his own, w/35% humidified O2 . Coughing well, on his own.
Chris (Newton - school friend) and Max visited late (saw Brian). Marc and Alana there, along with Dave.
Barb and Dave due tonight (my Dave's sister and her husband).
A Mother's Words (my journal)
BRIAN SMILED AT ME, for long stretches, many times tonight!
We smiled together and I cried happy tears!
Such a day.
Brian's first night off the ventilator. And he was up in a special chair, the "Cadillac Chair", twice today! (Friday)
Saturday 10-27-01 12:40 am
A Mother's Words
From my journal:
Brian has the most wonderful friends. They hold his hands, play his music, make silly inside jokes, tell him how great he looks. Next to me, Dave and Marshall, they are the most important people in his life. The hospital staff allegedly want to limit their influence/presence severely. Marshall (says things) about parents being more nurturing. I am going to try to get to the bottom of this, once and for all. I am tired of this being a source of conflict. Another bit of nonsense is "confusion". What's confusing for Brian is being in the hospital, surrounded by starangers and machines, instead of his peers. A different nurse every night. A different nurse at night than in the day. Being prodded, poked and turned. Those things are confusing.
This has been a problem from the first week: Threats vs compromise. Everyone telling ME what's best for my son, and NO ONE listening to me. Maybe tomorrow I can settle some of it, by talking to the social worker.
12:56 am Friday 10-26-01
Brian has the most wonderful friends. They hold his hands, play his music, make silly inside jokes, tell him how great he looks. Next to me, Dave and Marshall, they are the most important people in his life. The hospital staff allegedly want to limit their influence/presence severely. Marshall (says things) about parents being more nurturing. I am going to try to get to the bottom of this, once and for all. I am tired of this being a source of conflict. Another bit of nonsense is "confusion". What's confusing for Brian is being in the hospital, surrounded by starangers and machines, instead of his peers. A different nurse every night. A different nurse at night than in the day. Being prodded, poked and turned. Those things are confusing.
This has been a problem from the first week: Threats vs compromise. Everyone telling ME what's best for my son, and NO ONE listening to me. Maybe tomorrow I can settle some of it, by talking to the social worker.
12:56 am Friday 10-26-01
Friends
Thursday 25 October 2001
7:50 am Had a restless night, with movements like what I was seeing: sudden awakening, stiffening, tossing of head and legs. Didn't like Dave touching or trying to move his legs.
MK called. Dave talked to Barb yesterday; they will be here Saturday morning.(Barb and her husband)
9:35 am Because of his busy night, Brian has padded side bars on his bed. He is also worn out, though he opened his eyes to look at me, and when Dr. Sullivan and Nurse Mark spoke to him. Noises caused his to open his eyes too, like a cough from me. Heartrate in high 70s; O2 saturation in high 90s. Giving him humidified O2 at 40%. Warming it to help loosen gunk in lungs. Suctioning once an hour to help clear lungs - good STRONG cough. Did bronc yesterday: hence decision to keep vent. Neck is much less red. Dry skin on lips scabbing, peeling. Using Blistex. Sullivan pleased at physical progress.
9:15 pm Alana is with Brian. Marc and Vanessa are in Waiting Room. I visited Brian from about 4:30 to 5:50. I read The Jolly Mon. (childhood favorite) Put him to sleep, then RT woke him to suction. He was more awake after that, looked at and recognized book cover. Continued in and out of awareness, remaining time. eyes open much of the time, staring. Heartrate in 80s. Occasional stretching/stiffening. Marshall said all this continued throughout afternoon. Talk of bringing in familiar objects from Brian's room. Continuing conflicts over which kids get to visit.
Robin (Kate's mom) here this afternoon. Rosemary left. Jamie called.
12:40 am (10-26) We think Brian is smiling! Nurse Janis last night thought he was smiling at me, and Alana thinks he smiled at her tonight. Marc brought Vanessa in tonight. Nurse Ida fine w/more than 2. They held Brian's hands and helped him calm after major coughing fit and suctioning (during which I stroked his head and tried to calm him, held hand). Lots of movement, wide eyes. Flinched and turned away towards light when I turned off one he was staring at. Is on anti-seizure meds (again? since when?) Alana and Marc spending night.
He is on vent, since 9 pm. Heartrate in 70s when resting, 130 during coughing.
7:50 am Had a restless night, with movements like what I was seeing: sudden awakening, stiffening, tossing of head and legs. Didn't like Dave touching or trying to move his legs.
MK called. Dave talked to Barb yesterday; they will be here Saturday morning.(Barb and her husband)
9:35 am Because of his busy night, Brian has padded side bars on his bed. He is also worn out, though he opened his eyes to look at me, and when Dr. Sullivan and Nurse Mark spoke to him. Noises caused his to open his eyes too, like a cough from me. Heartrate in high 70s; O2 saturation in high 90s. Giving him humidified O2 at 40%. Warming it to help loosen gunk in lungs. Suctioning once an hour to help clear lungs - good STRONG cough. Did bronc yesterday: hence decision to keep vent. Neck is much less red. Dry skin on lips scabbing, peeling. Using Blistex. Sullivan pleased at physical progress.
9:15 pm Alana is with Brian. Marc and Vanessa are in Waiting Room. I visited Brian from about 4:30 to 5:50. I read The Jolly Mon. (childhood favorite) Put him to sleep, then RT woke him to suction. He was more awake after that, looked at and recognized book cover. Continued in and out of awareness, remaining time. eyes open much of the time, staring. Heartrate in 80s. Occasional stretching/stiffening. Marshall said all this continued throughout afternoon. Talk of bringing in familiar objects from Brian's room. Continuing conflicts over which kids get to visit.
Robin (Kate's mom) here this afternoon. Rosemary left. Jamie called.
12:40 am (10-26) We think Brian is smiling! Nurse Janis last night thought he was smiling at me, and Alana thinks he smiled at her tonight. Marc brought Vanessa in tonight. Nurse Ida fine w/more than 2. They held Brian's hands and helped him calm after major coughing fit and suctioning (during which I stroked his head and tried to calm him, held hand). Lots of movement, wide eyes. Flinched and turned away towards light when I turned off one he was staring at. Is on anti-seizure meds (again? since when?) Alana and Marc spending night.
He is on vent, since 9 pm. Heartrate in 70s when resting, 130 during coughing.
A Mother's Words
From my personal journal:
The tracheostomy went well. His upper lip is swollen but healing. He breathed on his own all day today, no vent. He squeezed the physical therapist's hand when she asked him to. He rolled over in bed by himself.
He seems to be returning, in baby steps. The neurologist wants more. I am excited over the smallest things - looking me in the eyes, pleading, is enough. "What's happening -
where am I??"
Each day is different. This past one was a roller coaster. Tuesday was quiet relief. Some days, I can't stop crying. Other days, I feel almost normal. Right now, I am tired.
Thursday 25 October 2001 12:45 am
The tracheostomy went well. His upper lip is swollen but healing. He breathed on his own all day today, no vent. He squeezed the physical therapist's hand when she asked him to. He rolled over in bed by himself.
He seems to be returning, in baby steps. The neurologist wants more. I am excited over the smallest things - looking me in the eyes, pleading, is enough. "What's happening -
where am I??"
Each day is different. This past one was a roller coaster. Tuesday was quiet relief. Some days, I can't stop crying. Other days, I feel almost normal. Right now, I am tired.
Thursday 25 October 2001 12:45 am
Wednesday, October 24, 2012
Movement and Bedtime Stories
October 24, 2012
I want to mention that Nurse Penny was remarkable. She was compassionate, competent, totally professional, stern when necessary, and always had Brian's best interests at heart. I will always remember her fondly.
Wednesday 24 October 2001
7:45 am Brian had a quiet night. Taken off ventilator at 5 am to breathe on his own. Has a "mask" over trach. This will be done periodically; if it gets too hard for him, they'll put him back on the vent.
Time to start inquiring about physical therapy.
9:30 am I was with Brian about an hour. Rubbed his hands and feet and he woke up, found me with his eyes. I talked to him, looked him in the eyes. He turned his head to Penny when she said his name. He lifted his left arm voluntarily, slowly, when I was on his right side talking to him. He seemed to be starting to cry when he first woke up. Eyes open, looking around.
Dr. Solomon, head of rehab, came in. Will have people start working with him. Also start giving him a medication that can help waking. Works with dopamine (natural chemistry). Name: ammantadine. Dr. Sullivan is concerned at length of time it has taken Brian to get this far. Not good for overall prognosis. But also says that Brian's youth in his favor, and there are no predictions. Compassionate and realistic. Long haul. Still the possibility that he will come no farther. Or improve hugely.
9:39 Fennel and Foster examining him.
6:10 pm I visited Brian 4:15 - 5 pm. He was tired, though his eyes opened quite a bit. Marshall and Penny moved his bed so he can look out the window. He can also look directly at his wall of posters, art, cars.
The trach is not oozing as much, but Brian's neck is a bit irritated/red/sore-looking. His upper lip is less swollen. Brian had brief sessions with a Physical Therapist and Occupational Therapist. He looked in the PT's eyes, she asked him to squeeze her hand, he closed his eyes 10 seconds - and squeezed! His flexibility and muscle tone are good.
(Prior to all this, Brian was lifting weights and was in great physical shape, though he was unable to do any cardio exercise due to the heart condition)
Alana visited Brian and Bubby was with her, in Waiting Room. Penny let Dan Golden and Ian visit. (Bubby was another female classmate)
9:15 pm Talked to Jesse and Jamie. They'll be here Friday. Linda also called.
Kellie visited Brian and asked him to squeeze her hand. 30 seconds, and he did! He also blinked his eyes for the nurse two different times. (He wasn't blinking at all, just opening, gazing or looking around or staring, then closing his eyes)
9:30 pm In Brian's room. Sleeping peacefully. Back on vent. Heartrate 87 (average); O2 absorption 95%. Has been on 35% O2 today.
Neck still red around trach.
Hands restrained because he flipped himself over on left side, throwing right leg nearly off bed!
He was mostly quiet during my time with him. Eyes open, gazing, then slowly the lids would drop. he moved some, especially throwing his right leg over, twisting his body. He seemed angered by the hand restraints.
I read him Goodnight Moon. 12:45 am
This was the beginning of regular bedtime stories from childhood. It was so much like being with the infant Brian at first that it seemed natural to read to him this way. It was soothing, with the lights low, and the ICU relatively quiet. It was a sweet time, as he woke up more and became more responsive. Our mother and son time. Bringing Brian back time.
I want to mention that Nurse Penny was remarkable. She was compassionate, competent, totally professional, stern when necessary, and always had Brian's best interests at heart. I will always remember her fondly.
Wednesday 24 October 2001
7:45 am Brian had a quiet night. Taken off ventilator at 5 am to breathe on his own. Has a "mask" over trach. This will be done periodically; if it gets too hard for him, they'll put him back on the vent.
Time to start inquiring about physical therapy.
9:30 am I was with Brian about an hour. Rubbed his hands and feet and he woke up, found me with his eyes. I talked to him, looked him in the eyes. He turned his head to Penny when she said his name. He lifted his left arm voluntarily, slowly, when I was on his right side talking to him. He seemed to be starting to cry when he first woke up. Eyes open, looking around.
Dr. Solomon, head of rehab, came in. Will have people start working with him. Also start giving him a medication that can help waking. Works with dopamine (natural chemistry). Name: ammantadine. Dr. Sullivan is concerned at length of time it has taken Brian to get this far. Not good for overall prognosis. But also says that Brian's youth in his favor, and there are no predictions. Compassionate and realistic. Long haul. Still the possibility that he will come no farther. Or improve hugely.
9:39 Fennel and Foster examining him.
6:10 pm I visited Brian 4:15 - 5 pm. He was tired, though his eyes opened quite a bit. Marshall and Penny moved his bed so he can look out the window. He can also look directly at his wall of posters, art, cars.
The trach is not oozing as much, but Brian's neck is a bit irritated/red/sore-looking. His upper lip is less swollen. Brian had brief sessions with a Physical Therapist and Occupational Therapist. He looked in the PT's eyes, she asked him to squeeze her hand, he closed his eyes 10 seconds - and squeezed! His flexibility and muscle tone are good.
(Prior to all this, Brian was lifting weights and was in great physical shape, though he was unable to do any cardio exercise due to the heart condition)
Alana visited Brian and Bubby was with her, in Waiting Room. Penny let Dan Golden and Ian visit. (Bubby was another female classmate)
9:15 pm Talked to Jesse and Jamie. They'll be here Friday. Linda also called.
Kellie visited Brian and asked him to squeeze her hand. 30 seconds, and he did! He also blinked his eyes for the nurse two different times. (He wasn't blinking at all, just opening, gazing or looking around or staring, then closing his eyes)
9:30 pm In Brian's room. Sleeping peacefully. Back on vent. Heartrate 87 (average); O2 absorption 95%. Has been on 35% O2 today.
Neck still red around trach.
Hands restrained because he flipped himself over on left side, throwing right leg nearly off bed!
He was mostly quiet during my time with him. Eyes open, gazing, then slowly the lids would drop. he moved some, especially throwing his right leg over, twisting his body. He seemed angered by the hand restraints.
I read him Goodnight Moon. 12:45 am
This was the beginning of regular bedtime stories from childhood. It was so much like being with the infant Brian at first that it seemed natural to read to him this way. It was soothing, with the lights low, and the ICU relatively quiet. It was a sweet time, as he woke up more and became more responsive. Our mother and son time. Bringing Brian back time.
Tuesday, October 23, 2012
Community
Tuesday 23 October 2001
An uneven night - a lot of stretching movements throughout, according to Dave. Aware of voices. Responded to bright light by opening eyes, then closing tight. Lungs much clearer. Had a bath.
10:25 am Tracheostomy went well. Back in room at 9:15. Some coughing/gagging, grimaces when he swallows. Upper lip very swollen, sores inside. Great to see his face! Trach is oozing; lots of drooling. Nurse Penny. set up suction on right side so we can help with ooze and drool.
Foster and Fennel visited this morning. Brian frowned when Foster called out his name and asked him to open eyes. The green spiral notebook we've all been writing in has been missing since Sunday - everyone has been looking, upset. (I had forgotten all about this! I think one of the kids brought it in, and we would write messages to Brian.) MK called early. Eric Warren (who did the printed self-portrait) called after trach; offered help w/fundraising.
4:35 Alana is with Brian. He has cards from Claudia and David Eliason (old friends of Marshall's and mine; Claudia was Jesse's godmother), and Deena from the Europe trip. Delia (of Gary and...) and Rob Hirschboeck visited. (Delia and Gary were from the Greensprings community. Rob was a poet friend of Dave's and mine) A neighbor of Wayne's Joy, is going to do an endurance horseback ride as a fundraiser. Eric Warren of Rogue Design Group wants to help with fundraising. Uncle Mike visited Brian. Mary Duhaime visited.
(Mike was Mike Gardiner, husband of Marshall's sister. Mary was a college friend of Marshall's).
6:04 pm Spent about 40 minutes with Brian. Put up new cards, read him poem from Kailey Freeman. (Classmate, daughter of a local musician). Peaceful, a little coughing, eyes open a bit, working mouth. Looks much better.
12:25 am Peaceful afternoon, except for slight fever. Could be from surgery; body fighting. Blood cultures being done. Trach less oozy. Tylenol and morphine for fever. Heartrate 80-82 when I was there tonight. Was awake a bit earlier, but asleep by 11 pm when I got in (visiting with Delia).
Max finally got to see him tonight - Rosemary took him in. He and I visited quite a while.
Faye visited Waiting Room w/oatmeal cookies during the day.
October 23, 2012
All those wonderful people! Rosemary who was there so much, Faye who came with goodies. Little Kailey Freeman, who was actually younger than Brian but knew him. So many who put in time and energy and love. Community. That's what it is about.
An uneven night - a lot of stretching movements throughout, according to Dave. Aware of voices. Responded to bright light by opening eyes, then closing tight. Lungs much clearer. Had a bath.
10:25 am Tracheostomy went well. Back in room at 9:15. Some coughing/gagging, grimaces when he swallows. Upper lip very swollen, sores inside. Great to see his face! Trach is oozing; lots of drooling. Nurse Penny. set up suction on right side so we can help with ooze and drool.
Foster and Fennel visited this morning. Brian frowned when Foster called out his name and asked him to open eyes. The green spiral notebook we've all been writing in has been missing since Sunday - everyone has been looking, upset. (I had forgotten all about this! I think one of the kids brought it in, and we would write messages to Brian.) MK called early. Eric Warren (who did the printed self-portrait) called after trach; offered help w/fundraising.
4:35 Alana is with Brian. He has cards from Claudia and David Eliason (old friends of Marshall's and mine; Claudia was Jesse's godmother), and Deena from the Europe trip. Delia (of Gary and...) and Rob Hirschboeck visited. (Delia and Gary were from the Greensprings community. Rob was a poet friend of Dave's and mine) A neighbor of Wayne's Joy, is going to do an endurance horseback ride as a fundraiser. Eric Warren of Rogue Design Group wants to help with fundraising. Uncle Mike visited Brian. Mary Duhaime visited.
(Mike was Mike Gardiner, husband of Marshall's sister. Mary was a college friend of Marshall's).
6:04 pm Spent about 40 minutes with Brian. Put up new cards, read him poem from Kailey Freeman. (Classmate, daughter of a local musician). Peaceful, a little coughing, eyes open a bit, working mouth. Looks much better.
12:25 am Peaceful afternoon, except for slight fever. Could be from surgery; body fighting. Blood cultures being done. Trach less oozy. Tylenol and morphine for fever. Heartrate 80-82 when I was there tonight. Was awake a bit earlier, but asleep by 11 pm when I got in (visiting with Delia).
Max finally got to see him tonight - Rosemary took him in. He and I visited quite a while.
Faye visited Waiting Room w/oatmeal cookies during the day.
October 23, 2012
All those wonderful people! Rosemary who was there so much, Faye who came with goodies. Little Kailey Freeman, who was actually younger than Brian but knew him. So many who put in time and energy and love. Community. That's what it is about.
A Mother's Words
From my personal journal:
This book has waited since the end of August, through the rest of my time at the Columbia (Hotel) and an auspicious beginning of subbing in September.
All that stopped two weeks ago, on October 8th, when my precious Brian was felled by a heart attack (sic). He has been in a coma ever since. Anoxic coma, loss of oxygen, possibly ten minutes. I need to start writing because it's starting to hurt too much. I am irritated by others, I don't want to talk, I have nothing to give to anyone except Brian. I am exhausted..........
Tomorrow Brian gets a tracheostomy done and I am anxious over his response. It will be at 8:30 am. Actually, it's today.
I'm so very sad, scared, worried, grief-stricken. My poor baby. Why did this have to happen? His world is so big, so rich and full. It's so unfair.
Oh Bry-Bry, I love you so much! I miss you! I'll see you tomorrow/today!
Tuesday 10-23-01 12:32 am
This book has waited since the end of August, through the rest of my time at the Columbia (Hotel) and an auspicious beginning of subbing in September.
All that stopped two weeks ago, on October 8th, when my precious Brian was felled by a heart attack (sic). He has been in a coma ever since. Anoxic coma, loss of oxygen, possibly ten minutes. I need to start writing because it's starting to hurt too much. I am irritated by others, I don't want to talk, I have nothing to give to anyone except Brian. I am exhausted..........
Tomorrow Brian gets a tracheostomy done and I am anxious over his response. It will be at 8:30 am. Actually, it's today.
I'm so very sad, scared, worried, grief-stricken. My poor baby. Why did this have to happen? His world is so big, so rich and full. It's so unfair.
Oh Bry-Bry, I love you so much! I miss you! I'll see you tomorrow/today!
Tuesday 10-23-01 12:32 am
Monday, October 22, 2012
Two Weeks
Monday 22 October 2001 (Mom)
7:40 am Some coughing and a slight fever overnight. Blood O2 up to 98-100 percent. Deeper breathing, some "apnea"-type breath-holding: normal. Between 11 and 12, some stretching/posturing, elbows bent, arms up. had to have hands restrained. Otherwise quiet.
9:25 am Spent an hour with him. Restful, with a brief coughing spell and a couple episodes of clenching hands and arms - less intense than last night. Turning head back and forth, as in changing position in sleep. Tossed out right arm once when turned to the right. Nurse Penny says he seems lighter than two days ago. This am's x-rays look clearer, said Dr. Fennel. Fever last night from lungs. Lots of gunk still. Heartrate 87-89, except when coughing. Everything else also good. Trach is set for tomorrow morning.
(The coughing/lung infection took SO long to go away. Watching him cough so much was excruciating)
Hands unrestrained again.
Marshall and Kellie with him. MK and Terry leave today after seeing him. Jesse and Jamie will be here Friday, 3 pm.
6:55 pm Alana, Matt, Marshall and Mom in Waiting Room. I just saw Brian, who was awakened in pain from vent tube. Every time he swallows, it hurts. He grimaces and clenches his hands. When it was especially bad, I held his left hand and we looked in each others' eyes (here I actually wrote "lives"). I stroked his head, reassured him. He was scared and in pain. (oh I do remember this, so much, the pain and fear in his precious face)
Trach is scheduled for 8:30 am tomorrow.
Randy F. and Jesse Hodges visited.
7:45 Thom Little and Jamie called.
8:35 Alana and Matt visited Brian. Aunt Linda called.
9:20 In Brian's room. Has been given some morphine to alleviate pain/agitation from tubes/coughing. Heartrate higher, in 90s. Breathing good, O2 absorption at 97%. Assisted one breath per minute, given 40% O2.
12:25 am Left Brian resting. All numbers good. A bit doped on morphine because tube is bothering him so much. Stroke his brow and reassure him. One time the nurse dropped something heavy in wastebasket and Brian's eyes popped open, startled. Trach at 8:30 am, about half an hour. No problems anticipated.
October 22, 2012
Brian's voice was affected by the tube down his throat and all the irritation. It was already deep, but it deepened and became harsher. Not at first, but as time went on and still now. Of course, he wasn't speaking at all yet. He was still mostly immobile and did not have any obvious voluntary movements except his eyes and head. No longer comatose, but not surfaced, either. Floating.
7:40 am Some coughing and a slight fever overnight. Blood O2 up to 98-100 percent. Deeper breathing, some "apnea"-type breath-holding: normal. Between 11 and 12, some stretching/posturing, elbows bent, arms up. had to have hands restrained. Otherwise quiet.
9:25 am Spent an hour with him. Restful, with a brief coughing spell and a couple episodes of clenching hands and arms - less intense than last night. Turning head back and forth, as in changing position in sleep. Tossed out right arm once when turned to the right. Nurse Penny says he seems lighter than two days ago. This am's x-rays look clearer, said Dr. Fennel. Fever last night from lungs. Lots of gunk still. Heartrate 87-89, except when coughing. Everything else also good. Trach is set for tomorrow morning.
(The coughing/lung infection took SO long to go away. Watching him cough so much was excruciating)
Hands unrestrained again.
Marshall and Kellie with him. MK and Terry leave today after seeing him. Jesse and Jamie will be here Friday, 3 pm.
6:55 pm Alana, Matt, Marshall and Mom in Waiting Room. I just saw Brian, who was awakened in pain from vent tube. Every time he swallows, it hurts. He grimaces and clenches his hands. When it was especially bad, I held his left hand and we looked in each others' eyes (here I actually wrote "lives"). I stroked his head, reassured him. He was scared and in pain. (oh I do remember this, so much, the pain and fear in his precious face)
Trach is scheduled for 8:30 am tomorrow.
Randy F. and Jesse Hodges visited.
7:45 Thom Little and Jamie called.
8:35 Alana and Matt visited Brian. Aunt Linda called.
9:20 In Brian's room. Has been given some morphine to alleviate pain/agitation from tubes/coughing. Heartrate higher, in 90s. Breathing good, O2 absorption at 97%. Assisted one breath per minute, given 40% O2.
12:25 am Left Brian resting. All numbers good. A bit doped on morphine because tube is bothering him so much. Stroke his brow and reassure him. One time the nurse dropped something heavy in wastebasket and Brian's eyes popped open, startled. Trach at 8:30 am, about half an hour. No problems anticipated.
October 22, 2012
Brian's voice was affected by the tube down his throat and all the irritation. It was already deep, but it deepened and became harsher. Not at first, but as time went on and still now. Of course, he wasn't speaking at all yet. He was still mostly immobile and did not have any obvious voluntary movements except his eyes and head. No longer comatose, but not surfaced, either. Floating.
Sunday, October 21, 2012
A Day Away
October 21, 2012
Sometime during this week in 2001, a man who had been accidentally shot in a hunting accident entered the ICU. He was in the room next to Brian, and the family stayed at Cheney House: kids, wife, others. They were really nice folks and we interacted with them often. Early in the morning of the 21st the man died and we witnessed the intense grief of the family. I think of them now and wish them well. It was so crushingly sad, because he had seemed to be recovering.
Sunday, October 21, 2001 Aunt Mary Kathryn (writing)
Couple of scares overnight for Dave - bad news for the man in the neighboring room at same time as an alarm on the respirator (just water in the tubes). Otherwise Brian had a fairly peaceful night.
6:30 PM Restful day with few visitors. Brian still fighting the breathing tube and coughing a bit.
Responded positively when Mary Kathryn calmed him through respiratory therapist visit; turned head to respond to Mike's voice. (RT?)
Martha & Dave went to Greensprings for day; Terry & Mary doing laundry @ Cheney House; Alana went home finally.
Daniel Salisbury visited. (Good friend of mine; son Nate is Brian's age)
Sometime during this week in 2001, a man who had been accidentally shot in a hunting accident entered the ICU. He was in the room next to Brian, and the family stayed at Cheney House: kids, wife, others. They were really nice folks and we interacted with them often. Early in the morning of the 21st the man died and we witnessed the intense grief of the family. I think of them now and wish them well. It was so crushingly sad, because he had seemed to be recovering.
Sunday, October 21, 2001 Aunt Mary Kathryn (writing)
Couple of scares overnight for Dave - bad news for the man in the neighboring room at same time as an alarm on the respirator (just water in the tubes). Otherwise Brian had a fairly peaceful night.
6:30 PM Restful day with few visitors. Brian still fighting the breathing tube and coughing a bit.
Responded positively when Mary Kathryn calmed him through respiratory therapist visit; turned head to respond to Mike's voice. (RT?)
Martha & Dave went to Greensprings for day; Terry & Mary doing laundry @ Cheney House; Alana went home finally.
Daniel Salisbury visited. (Good friend of mine; son Nate is Brian's age)
Peaceful
Saturday 20 October 2001
9:12 am Peaceful night. One stretch raised heartrate to 130s, Dave reported. We don't believe it's just posturing - it looks and feels deliberate: "I want out!" Merrikat and Terry arrived at 7:30. Alana and Marc spent the night. Marshall and Kellie are with Brian now. Eyes opening, was maintaining long eye contact with me. Heartrate 87- 91. O2 at 40%, assist the same. Results of yesterday' scope indicate some irritation and a little bit of infection (Irritation 4+, bacteria 1+). Nothing alarming. He looks great, peaceful, good color.
10 pm Dan Ferguson, Sarah Golden, and Marc are with Brian. Justin Hall and Alana are in Waiting Room. Brian is sleeping. Good day, restful. Ali got to see him. Cindy Triplett and Matt Mackinnon visited. (teachers) Carol Worthington called this eve. (Greensprings friend of ours, from up where Dave and I lived) Justin got to see Brian this morning and tonight. (Justin and his brother, Ryan, are childhood friends of the boys) Trying to get kids in again, without overwhelming Brian or nurses.
No sedatives. Breathing with one assist. Eyes opening wide, earlier. Heartrate staying down in 80s. Was gripping my hand and Dave's earlier, as well (8 pm). We'd grip, Brian would grip. Trach is scheduled for Tuesday morning, unless he doesn't need it. (At this point, Brian still had a big tube down his throat)
11:20 No restraints on wrists at all Sleeping peacefully. Very warm. Heartrate at 87 when I came in. Up briefly to 105 when nurse moved him. No sweating. Jamie and Jesse called at 10:30. Will fly down next Friday.
Alana is spending the night again.
9:12 am Peaceful night. One stretch raised heartrate to 130s, Dave reported. We don't believe it's just posturing - it looks and feels deliberate: "I want out!" Merrikat and Terry arrived at 7:30. Alana and Marc spent the night. Marshall and Kellie are with Brian now. Eyes opening, was maintaining long eye contact with me. Heartrate 87- 91. O2 at 40%, assist the same. Results of yesterday' scope indicate some irritation and a little bit of infection (Irritation 4+, bacteria 1+). Nothing alarming. He looks great, peaceful, good color.
10 pm Dan Ferguson, Sarah Golden, and Marc are with Brian. Justin Hall and Alana are in Waiting Room. Brian is sleeping. Good day, restful. Ali got to see him. Cindy Triplett and Matt Mackinnon visited. (teachers) Carol Worthington called this eve. (Greensprings friend of ours, from up where Dave and I lived) Justin got to see Brian this morning and tonight. (Justin and his brother, Ryan, are childhood friends of the boys) Trying to get kids in again, without overwhelming Brian or nurses.
No sedatives. Breathing with one assist. Eyes opening wide, earlier. Heartrate staying down in 80s. Was gripping my hand and Dave's earlier, as well (8 pm). We'd grip, Brian would grip. Trach is scheduled for Tuesday morning, unless he doesn't need it. (At this point, Brian still had a big tube down his throat)
11:20 No restraints on wrists at all Sleeping peacefully. Very warm. Heartrate at 87 when I came in. Up briefly to 105 when nurse moved him. No sweating. Jamie and Jesse called at 10:30. Will fly down next Friday.
Alana is spending the night again.
Saturday, October 20, 2012
Coming Up for Air
Friday 19 October 2001
7:37 am No change. Heartrate in low 80s -up into 90s, except for coughing spell. Marc here sleeping; came in with Dave around 2:30. Dave and I are both noticing that (B's) left eye seems to open and focus more than right.
9:05 I spent an hour with him. Groggy, in and out. Eyes open off and on, halfway. Looked me in the eye a bit. (A strangely reptilian gaze, I remember) Being prepared for PEG at 10. Dad is in with him. I am going to sleep again. Nurse tested reflexes. Eyes dilated but wouldn't open on command (needs familiar voice?) Responded to fingertip squeeze by withdrawing/curling fingers. No response to toe and foot stimuli.
4:11 pm Pulmonologist went in (scope) to check out lungs : some gunk still in very far corner of right lung. Went in around 3:15 pm. PEG tube procedure went fine. Brian sedated for both procedures. Opened eyes and looked at Rosemary - first time for her!
(These early gazes were reminiscent of newborn Brian first observing his world)
6:20 pm Visited Brian half an hour. Quiet, drugged most of time. Heartrate 81-85. Brething same. PEG in place. Hands still unrestrained. Opened eyes a little bit. Face looks great with his nose free again. Yawned a bunch - obviously irritated by stuff still down throat.
Wayne (Fitzpatrick, Randy's dad), Alana, Max, David, Chris visited. Alana staying late. Marc still here. Jesse called - had his first nearly-normal day today (able to concentrate in school).
10 pm Brian's eyes are half open and he is tracking me. Relaxed. Heartrate at 98. Breathing up a bit at 25 (w/2 assists per minute). His hands are tied because he was lifting his arms earlier when they were re-taping breathing tube. PEG is fine. Brahms on cd player: something quiet. Nurse Anna noticing "lightening".
Kate called this evening. Tony Henthorn visited at Cheney House. Justin Hall and Sarah Golden visited, and Alana was here. Justin and Sarah couldn't get in to see Brian.
12:45 am Eyes open till about 11:30, when he finally conked. Some "posturing" (stretching? awakening?), yawning. Seemed close to surface, scared. Talked him through. Heartrate went up to 105 and went down quickly. Breathing was heavy, took a little longer. Marc and Alana with him.
7:37 am No change. Heartrate in low 80s -up into 90s, except for coughing spell. Marc here sleeping; came in with Dave around 2:30. Dave and I are both noticing that (B's) left eye seems to open and focus more than right.
9:05 I spent an hour with him. Groggy, in and out. Eyes open off and on, halfway. Looked me in the eye a bit. (A strangely reptilian gaze, I remember) Being prepared for PEG at 10. Dad is in with him. I am going to sleep again. Nurse tested reflexes. Eyes dilated but wouldn't open on command (needs familiar voice?) Responded to fingertip squeeze by withdrawing/curling fingers. No response to toe and foot stimuli.
4:11 pm Pulmonologist went in (scope) to check out lungs : some gunk still in very far corner of right lung. Went in around 3:15 pm. PEG tube procedure went fine. Brian sedated for both procedures. Opened eyes and looked at Rosemary - first time for her!
(These early gazes were reminiscent of newborn Brian first observing his world)
6:20 pm Visited Brian half an hour. Quiet, drugged most of time. Heartrate 81-85. Brething same. PEG in place. Hands still unrestrained. Opened eyes a little bit. Face looks great with his nose free again. Yawned a bunch - obviously irritated by stuff still down throat.
Wayne (Fitzpatrick, Randy's dad), Alana, Max, David, Chris visited. Alana staying late. Marc still here. Jesse called - had his first nearly-normal day today (able to concentrate in school).
10 pm Brian's eyes are half open and he is tracking me. Relaxed. Heartrate at 98. Breathing up a bit at 25 (w/2 assists per minute). His hands are tied because he was lifting his arms earlier when they were re-taping breathing tube. PEG is fine. Brahms on cd player: something quiet. Nurse Anna noticing "lightening".
Kate called this evening. Tony Henthorn visited at Cheney House. Justin Hall and Sarah Golden visited, and Alana was here. Justin and Sarah couldn't get in to see Brian.
12:45 am Eyes open till about 11:30, when he finally conked. Some "posturing" (stretching? awakening?), yawning. Seemed close to surface, scared. Talked him through. Heartrate went up to 105 and went down quickly. Breathing was heavy, took a little longer. Marc and Alana with him.
Thursday, October 18, 2012
Lighter
October 18, 2012
The entries written by me are the ones triggering painful memories. Now I feel the real pain welling up, but also the poignant recollections of his awakening. The stages he went through, returning like an infant. Right before he began to awaken I dreamed I gave birth to him again. We were alone in a darkened room and he crawled onto my belly. It was like an underwater birth, a continuation of my visions of him way below the surface, hovering, floating waiting till it was time.
Thursday, 18 October 2001
7:35 am Quiet night with Dave. Heartrate around 100.
8:54 am Mom spent most of the hour with Brian. Waking up a bit. Nurse Penny agrees he's more responsive than she's seen. Still turning away from suction. Heartrate 100-112, depending on stimuli. Eyes open a bit. looking at me. Slight grimace when swallowing Dr. Fennel with him; will consult afterwards. Says EEG results 'not real good". Linda and Marshall here. MK called this morning. Jamie called last night. ??Fennel said EEG looked worse, but made no sense in light of Brian's increased responses. Nurse and Fennel say Brian appears "lighter". Everyone noticing changes. He lifted right arm all the way back over his head last night. Still "wait and see". PEG tube tomorrow or Saturday probably, trach on Monday. Almost no sedation yesterday : 3 mg MS (morphine) in afternoon, another tiny bit last night.
8:50 pm Marc Likens is with Brian. Marshall and Kellie just left. Mom is here. Brian is heavily (?) sedated but fighting it. Been coughing and the nurse and RT (respiratory therapist) have been trying to clear him. Wears him out. Alana and David visited; Brian's eyes open and heartrate at 81 when they left the room. Thom (Little) and Laurel (Hansen) called. Jessica Ericson visited, but didn't see Brian. Chaplain Norm is working with us (very mellow Methodist). PEG goes in tomorrow morning at 10 am.
(Thom is a dear musician friend of ours. Laurel has known Brian since he was born. I met Norm through PFLAG, then discovered he was the chaplain at the hospital)
12:30 am (10-19-01) 2 1/2 hours with Brian. Eyes half open most of the time. He is starting to blink. No startle reflex tonight - morphine? Very relaxed. 40% O2; 2 assisted breaths per minute. Heartrate in the 90s, 90-96. Opened his eyes wide when group of people were singing "Happy Birthday". Almost seemed to be gazing past me at the posters and pictures on the wall. Dave there for the night, as usual. Marc is staying the night, as well. Rosemary has returned and Linda left. Merrikat and Terry will return Saturday morning. (my sister and brother-in-law)
I remember that moment with the singing very clearly. A patient in a nearby room had a birthday and when Brian heard the singing his eyes got very wide. He definitely heard it and it sparked some awareness. It was a moment of clarity. I can also still see him gazing past me at the wall. I remember stepping aside to let him see, wondering if the pictures were recognizable to him. we had no idea how well he could see. It was clear that he was directing his gaze.
Lighter. Yes, that's the word. Buoyant. Surfacing.
The entries written by me are the ones triggering painful memories. Now I feel the real pain welling up, but also the poignant recollections of his awakening. The stages he went through, returning like an infant. Right before he began to awaken I dreamed I gave birth to him again. We were alone in a darkened room and he crawled onto my belly. It was like an underwater birth, a continuation of my visions of him way below the surface, hovering, floating waiting till it was time.
Thursday, 18 October 2001
7:35 am Quiet night with Dave. Heartrate around 100.
8:54 am Mom spent most of the hour with Brian. Waking up a bit. Nurse Penny agrees he's more responsive than she's seen. Still turning away from suction. Heartrate 100-112, depending on stimuli. Eyes open a bit. looking at me. Slight grimace when swallowing Dr. Fennel with him; will consult afterwards. Says EEG results 'not real good". Linda and Marshall here. MK called this morning. Jamie called last night. ??Fennel said EEG looked worse, but made no sense in light of Brian's increased responses. Nurse and Fennel say Brian appears "lighter". Everyone noticing changes. He lifted right arm all the way back over his head last night. Still "wait and see". PEG tube tomorrow or Saturday probably, trach on Monday. Almost no sedation yesterday : 3 mg MS (morphine) in afternoon, another tiny bit last night.
8:50 pm Marc Likens is with Brian. Marshall and Kellie just left. Mom is here. Brian is heavily (?) sedated but fighting it. Been coughing and the nurse and RT (respiratory therapist) have been trying to clear him. Wears him out. Alana and David visited; Brian's eyes open and heartrate at 81 when they left the room. Thom (Little) and Laurel (Hansen) called. Jessica Ericson visited, but didn't see Brian. Chaplain Norm is working with us (very mellow Methodist). PEG goes in tomorrow morning at 10 am.
(Thom is a dear musician friend of ours. Laurel has known Brian since he was born. I met Norm through PFLAG, then discovered he was the chaplain at the hospital)
12:30 am (10-19-01) 2 1/2 hours with Brian. Eyes half open most of the time. He is starting to blink. No startle reflex tonight - morphine? Very relaxed. 40% O2; 2 assisted breaths per minute. Heartrate in the 90s, 90-96. Opened his eyes wide when group of people were singing "Happy Birthday". Almost seemed to be gazing past me at the posters and pictures on the wall. Dave there for the night, as usual. Marc is staying the night, as well. Rosemary has returned and Linda left. Merrikat and Terry will return Saturday morning. (my sister and brother-in-law)
I remember that moment with the singing very clearly. A patient in a nearby room had a birthday and when Brian heard the singing his eyes got very wide. He definitely heard it and it sparked some awareness. It was a moment of clarity. I can also still see him gazing past me at the wall. I remember stepping aside to let him see, wondering if the pictures were recognizable to him. we had no idea how well he could see. It was clear that he was directing his gaze.
Lighter. Yes, that's the word. Buoyant. Surfacing.
Wednesday, October 17, 2012
Re-Birthing
Wednesday, 17 October 2001
7:35 am Brian had a quiet night, except for a heartrate up to 110. When Mom left his heartrate was down to around 96 and he was sleeping. As the night progresses, it gets higher (heart meds wearing off?) Some coughing overnight. Still on antibiotics. Jamie called at 7:40 am, Mom talked to her. Aunt MK called at 7:50 am; Mom talked to her.
8:25 am I just visited him. Got cleaned up from bowel movement (3 last night). Heartrate about the same. Liked having me stroke brow. Splints off right now. Very relaxed; was turned and no posturing. Dr. Fennel in right now doing tests. No drugs. EEG scheduled today.
("Mom" is me. "Dad" is Marshall. The splints were to keep his ankles and feet from turning inward)
10:10 am Fennel examined: still needs vent, O2 @ 50%. Increased feeding. EEG done, no results yet. Foster visited: content w/what other docs doing, upped Lopressor & Ativan, antibiotics. Everything going into pic (?) valve in left forearm (central shunt in left shoulder gone). Opening eyes for Marshall & music (Orbital). No other voluntrary movements. Very relaxed. Linda in Waiting Room, Mom & Dave napping.
(Visitors recorded by Linda: Lynne Likens (Marc's mother), Stephanie, Marc, Vanessa, Theresa, Kathleen, Randy, Alana)
5:55 pm I was in with him 4:30-5:30. Left him peaceful. Heartrate 88-91. Sleeping. I put Brahms on the boombox. Eyes opened a little and he moved his head, when I told him I was leaving. I stroked his head softly and he settled. He likes having his head stroked, soft touch on forehead. (He loved this as an infant and toddler and we could put him to sleep this way!)
This afternoon he spiked a fever, sweated a lot, coughed some. Tylenol and a tiny bit of morphine (we are cautious about morphine). Marc and Vanessa visited. Alana is here. Stephanie visited, as did Ali. Nurse Penny will request something to combat effects of antibiotics; he is getting thrush in his mouth. Breathing with assist each 8-9 breaths. O2 is @ 50%.
6:30 pm Marshall & Kellie talked to Fennell, who wants to wait on tracheostomy to see if he gets to the point of not needing the breathing assistance. So we are aiming at Monday. Heartrate down in 80s - meds are working.
Alana is helping put together a fundraiser.
9:58 pm Brian's room. Eyes open intermittently, looking at me. Very aware. Slight grimace when he swallows: discomfort. Hands NOT tied. Heartrate a little high, 101-6. Breathing 10 spontaneous to 1 assist.Randy Fitzpatrick was here before me. Brian's eyes open a lot, seemed very "glad" to have Randy here. Nurse said Brian didn't like having mouth suctioned or temp taken. He lifted left arm voluntarily! Randy talked to him a lot, as did I. When eyes are more open, heart rate goes up to 105-6.
(His hands were tied because he had been picking at things like the tubes. It was heartbreaking to have to tie him down like that)
10:45 Cleaned up and moved. Didn't want to open mouth for suction. Moved arms - as though to get away? - turned head. Moves head away when thermometer beeps in ear. Heart rate no higher than 112 throughout, except one moment of turning when up to 123. Went back down to 106 easily.
Has been locking eyes with me: searches for me as I speak, then locks in. Very peaceful when I read Just For You.
(He was waking up into infancy at this time. The book was one that I read to him when he was very little. I think it is by Mercer Mayer, but I don't have it any longer. It might have gone to the grandsons!)
12:25 am 10-18-01 Dave is now with Brian. Some distress when turned to right side: coughing, heart up to 120 for ten-fifteen minutes, hard breathing. RT and nurse cleared his lungs. Should not be on right side - this happens every time. Long time calming. Very busy night. Clean up and morphine at midnight. Most alert yet.
October 17, 2012
I have inserted commentary/explanation as it occurs while I type. I hope it is not confusing.
This was very painful. I have to stop.
7:35 am Brian had a quiet night, except for a heartrate up to 110. When Mom left his heartrate was down to around 96 and he was sleeping. As the night progresses, it gets higher (heart meds wearing off?) Some coughing overnight. Still on antibiotics. Jamie called at 7:40 am, Mom talked to her. Aunt MK called at 7:50 am; Mom talked to her.
8:25 am I just visited him. Got cleaned up from bowel movement (3 last night). Heartrate about the same. Liked having me stroke brow. Splints off right now. Very relaxed; was turned and no posturing. Dr. Fennel in right now doing tests. No drugs. EEG scheduled today.
("Mom" is me. "Dad" is Marshall. The splints were to keep his ankles and feet from turning inward)
10:10 am Fennel examined: still needs vent, O2 @ 50%. Increased feeding. EEG done, no results yet. Foster visited: content w/what other docs doing, upped Lopressor & Ativan, antibiotics. Everything going into pic (?) valve in left forearm (central shunt in left shoulder gone). Opening eyes for Marshall & music (Orbital). No other voluntrary movements. Very relaxed. Linda in Waiting Room, Mom & Dave napping.
(Visitors recorded by Linda: Lynne Likens (Marc's mother), Stephanie, Marc, Vanessa, Theresa, Kathleen, Randy, Alana)
5:55 pm I was in with him 4:30-5:30. Left him peaceful. Heartrate 88-91. Sleeping. I put Brahms on the boombox. Eyes opened a little and he moved his head, when I told him I was leaving. I stroked his head softly and he settled. He likes having his head stroked, soft touch on forehead. (He loved this as an infant and toddler and we could put him to sleep this way!)
This afternoon he spiked a fever, sweated a lot, coughed some. Tylenol and a tiny bit of morphine (we are cautious about morphine). Marc and Vanessa visited. Alana is here. Stephanie visited, as did Ali. Nurse Penny will request something to combat effects of antibiotics; he is getting thrush in his mouth. Breathing with assist each 8-9 breaths. O2 is @ 50%.
6:30 pm Marshall & Kellie talked to Fennell, who wants to wait on tracheostomy to see if he gets to the point of not needing the breathing assistance. So we are aiming at Monday. Heartrate down in 80s - meds are working.
Alana is helping put together a fundraiser.
9:58 pm Brian's room. Eyes open intermittently, looking at me. Very aware. Slight grimace when he swallows: discomfort. Hands NOT tied. Heartrate a little high, 101-6. Breathing 10 spontaneous to 1 assist.Randy Fitzpatrick was here before me. Brian's eyes open a lot, seemed very "glad" to have Randy here. Nurse said Brian didn't like having mouth suctioned or temp taken. He lifted left arm voluntarily! Randy talked to him a lot, as did I. When eyes are more open, heart rate goes up to 105-6.
(His hands were tied because he had been picking at things like the tubes. It was heartbreaking to have to tie him down like that)
10:45 Cleaned up and moved. Didn't want to open mouth for suction. Moved arms - as though to get away? - turned head. Moves head away when thermometer beeps in ear. Heart rate no higher than 112 throughout, except one moment of turning when up to 123. Went back down to 106 easily.
Has been locking eyes with me: searches for me as I speak, then locks in. Very peaceful when I read Just For You.
(He was waking up into infancy at this time. The book was one that I read to him when he was very little. I think it is by Mercer Mayer, but I don't have it any longer. It might have gone to the grandsons!)
12:25 am 10-18-01 Dave is now with Brian. Some distress when turned to right side: coughing, heart up to 120 for ten-fifteen minutes, hard breathing. RT and nurse cleared his lungs. Should not be on right side - this happens every time. Long time calming. Very busy night. Clean up and morphine at midnight. Most alert yet.
October 17, 2012
I have inserted commentary/explanation as it occurs while I type. I hope it is not confusing.
This was very painful. I have to stop.
Shift Change
I wrote this poem on the date at the bottom. It was the first one I wrote post-cardiac arrest.
Tuesday, October 16, 2012
Mom Takes Over
October 16, 2012
My sister had to return home to La Center, Washington, so after she began the entry for the day, I took over. I was distressed that she had to leave. She helped keep me going. The entries will become longer, as I am more wordy and I carried the book with me everywhere, taking notes constantly. The switch in voices will be noted within the entry.
Tuesday, October 16, 2001
Noon Brian had a pretty peaceful night. See saw, balancing act of stimuli vs heartrate but latter was down in mid- to low 90's at 8:00 AM. Fever still down; lungs still clearing. Respirations up a bit so being medicated for that. Family meeting with pulmonologist, Dr. Fennel, and social worker to discuss brian's progress and family dynamics. Cleared the air. Not a great sign that Brian is not interacting more yet but with medication so high he hasn't had a lot of opportunity.
Aunt Mary Kathryn left for La Center.
6:20 pm Mom takes over. Just saw him. Marshall brought boombox so B can have his music. Orbital is currently playing, and Brian stays calm. Heartrate 96-101. Cardiazem is done, unless his heartrate spikes. Lopressor is being injected intravenously periodically, for heart. Slight fever, so fan is on. I re-hung dreamcatcher, consolidated crystals w/boombox. Collage poster, Spanish card, Jacob Phelps' drawing on wall. I'll stick up some others, including photos, tonight. Alana is due to put up self-portrait. Aunt Linda is here; she, Mary, Marshall, Kellie, working on puzzle./Eyes opening a bit when I was there./
10/16/01 brief notes on meeting w/pulmonologist this am: Pneumonia is cleared up; on antibiotics 5-6 more days (some gunk suctioned out today). Will do tracheostomy and PEG tube before weekend, to get tubes out of mouth and nose (breath and food), alleviate irritation, pain, infection risk. Fennel wants rehab team to start working w/Brian/us. Brian does have sleep phases. Active adrenal gland and high epinephren may be pushing up heartrate (youth). Quote: "a fairly significant coma" "good chance of recovery"
9:22 pm Eyes opening, looking at Dad and Aunt Linda, responding to music. Jesse and Randy called. Jesse found a website that has info on anoxic comas. He's doing "okay" (with hesitation). Randy needs to see Brian.
Rosemary and Faye also called this evening MK called Dave at Cheney House.
Dad and Linda left @ 9:25. Mom here.
Brian turned his head at a loud noise when I was there, around 9:30 pm. Eyes open alot. Self-portrait up.
We began playing the music to help bring him back, to calm him, to create familiarity. The staff amazingly allowed this. They knew it was important. They had the experience with coma patients. We had decorated the room with a collage the kids made, a card from Spanish class, crystals that were given to Brian. The dreamcatcher was made by a young Lakota woman I had worked with, Jessica Cedarface. She had given it to me a couple years before.
"Significant coma" still upsets me. It's weird to read that next to "good recovery".
Aunt Linda is Marshall's aunt, Rosemary's sister. Linda is another one of the strong women of the family. Brian is very fond of her still.
Randy Fitzpatrick is a friend of Brian's from infancy. He was there at the beginning of this.
Faye is a friend of ours from 'way back. She was Brian's first art teacher. A gentle soul, a dear heart.
The self-portrait mentioned was the abstract version that I published here.
I remember that moment when he turned his head. As I typed it the visual memory returned. Clearly. I can see it now. I can hear the noise and feel my joy at watching him respond. Such a precious moment of returning life.
My sister had to return home to La Center, Washington, so after she began the entry for the day, I took over. I was distressed that she had to leave. She helped keep me going. The entries will become longer, as I am more wordy and I carried the book with me everywhere, taking notes constantly. The switch in voices will be noted within the entry.
Tuesday, October 16, 2001
Noon Brian had a pretty peaceful night. See saw, balancing act of stimuli vs heartrate but latter was down in mid- to low 90's at 8:00 AM. Fever still down; lungs still clearing. Respirations up a bit so being medicated for that. Family meeting with pulmonologist, Dr. Fennel, and social worker to discuss brian's progress and family dynamics. Cleared the air. Not a great sign that Brian is not interacting more yet but with medication so high he hasn't had a lot of opportunity.
Aunt Mary Kathryn left for La Center.
6:20 pm Mom takes over. Just saw him. Marshall brought boombox so B can have his music. Orbital is currently playing, and Brian stays calm. Heartrate 96-101. Cardiazem is done, unless his heartrate spikes. Lopressor is being injected intravenously periodically, for heart. Slight fever, so fan is on. I re-hung dreamcatcher, consolidated crystals w/boombox. Collage poster, Spanish card, Jacob Phelps' drawing on wall. I'll stick up some others, including photos, tonight. Alana is due to put up self-portrait. Aunt Linda is here; she, Mary, Marshall, Kellie, working on puzzle./Eyes opening a bit when I was there./
10/16/01 brief notes on meeting w/pulmonologist this am: Pneumonia is cleared up; on antibiotics 5-6 more days (some gunk suctioned out today). Will do tracheostomy and PEG tube before weekend, to get tubes out of mouth and nose (breath and food), alleviate irritation, pain, infection risk. Fennel wants rehab team to start working w/Brian/us. Brian does have sleep phases. Active adrenal gland and high epinephren may be pushing up heartrate (youth). Quote: "a fairly significant coma" "good chance of recovery"
9:22 pm Eyes opening, looking at Dad and Aunt Linda, responding to music. Jesse and Randy called. Jesse found a website that has info on anoxic comas. He's doing "okay" (with hesitation). Randy needs to see Brian.
Rosemary and Faye also called this evening MK called Dave at Cheney House.
Dad and Linda left @ 9:25. Mom here.
Brian turned his head at a loud noise when I was there, around 9:30 pm. Eyes open alot. Self-portrait up.
We began playing the music to help bring him back, to calm him, to create familiarity. The staff amazingly allowed this. They knew it was important. They had the experience with coma patients. We had decorated the room with a collage the kids made, a card from Spanish class, crystals that were given to Brian. The dreamcatcher was made by a young Lakota woman I had worked with, Jessica Cedarface. She had given it to me a couple years before.
"Significant coma" still upsets me. It's weird to read that next to "good recovery".
Aunt Linda is Marshall's aunt, Rosemary's sister. Linda is another one of the strong women of the family. Brian is very fond of her still.
Randy Fitzpatrick is a friend of Brian's from infancy. He was there at the beginning of this.
Faye is a friend of ours from 'way back. She was Brian's first art teacher. A gentle soul, a dear heart.
The self-portrait mentioned was the abstract version that I published here.
I remember that moment when he turned his head. As I typed it the visual memory returned. Clearly. I can see it now. I can hear the noise and feel my joy at watching him respond. Such a precious moment of returning life.
Monday, October 15, 2012
Hopeful Signs
Monday, October 15, 2001
Brian had a very peaceful night - no extreme posturing, no spikes of heartrate, lungs are clearer, temperature close to normal most of the night, less coughing.
9:00 AM Day nurse says they will be trying to limit visits to one person at a time today due to hypersensitivity to stimuli. Brian is on no sedatives right now and is kind of "maxed out" on his meds - must keep heart rate lower than the 110 it has been the past 24 hrs. Heart rate was between 94 & 107 the past hour. Some movement of head (roll from side to center) and raise of left arm. Ventilator giving assist every 6-8 breaths to help with O2 (oxygen) sets. Dr. Naris tested for purposeful response to pain - Brian responded well. He (Naris) is very hopeful.
11:00 Brian was turned and got a bit agitated; one stronger posturing episode so they gave him some morphine for calming. Rosemary left at noon. (Brian's paternal grandmother)
3:00 Brian was opening his eyes slightly for Kate. A bit agitated and was given some sedation. Heart rate around 100 - 110.
9:00 PM Brian resting pretty peacefully after a day of single visitors. Heartrate still consistently up to 106 - 112; mystery - should be lower.
Kate left for Eugene tonight.
October 15, 2012
Kate is a friend who has known Brian since he was an infant. She lived across the street and is Jesse's age. She was virtually part of our family, the boys' "adopted sister". Still is! It makes me smile to think that she was one of the few who got to see some of those first eye openings.
Rosemary was a great support throughout. She is a strong woman, very calm and practical. Two of the wonderful women who were there for all of us.
Brian had a very peaceful night - no extreme posturing, no spikes of heartrate, lungs are clearer, temperature close to normal most of the night, less coughing.
9:00 AM Day nurse says they will be trying to limit visits to one person at a time today due to hypersensitivity to stimuli. Brian is on no sedatives right now and is kind of "maxed out" on his meds - must keep heart rate lower than the 110 it has been the past 24 hrs. Heart rate was between 94 & 107 the past hour. Some movement of head (roll from side to center) and raise of left arm. Ventilator giving assist every 6-8 breaths to help with O2 (oxygen) sets. Dr. Naris tested for purposeful response to pain - Brian responded well. He (Naris) is very hopeful.
11:00 Brian was turned and got a bit agitated; one stronger posturing episode so they gave him some morphine for calming. Rosemary left at noon. (Brian's paternal grandmother)
3:00 Brian was opening his eyes slightly for Kate. A bit agitated and was given some sedation. Heart rate around 100 - 110.
9:00 PM Brian resting pretty peacefully after a day of single visitors. Heartrate still consistently up to 106 - 112; mystery - should be lower.
Kate left for Eugene tonight.
October 15, 2012
Kate is a friend who has known Brian since he was an infant. She lived across the street and is Jesse's age. She was virtually part of our family, the boys' "adopted sister". Still is! It makes me smile to think that she was one of the few who got to see some of those first eye openings.
Rosemary was a great support throughout. She is a strong woman, very calm and practical. Two of the wonderful women who were there for all of us.
Sunday, October 14, 2012
Under Water
Sunday, October 14, 2001
9:00 AM Brian is resting comfortably after a fever spike & higher pulse last night. His temperature is back down as is his pulse. he had more posturing episodes overnight but none late this morning. Medication being adjusted still - added morphine to Atavan for relaxation. Still on anti-seizure medicine to maintain and keep from happening. 10:00 More stimulated with some posturing but heartrate not so high and better recovery. Martha & Marshall worked together to talk him through. 1:30 Pulmonologist set of very strong posturing episodes with pulse up to 140 so we gave him some quiet time. Prior to that, Alana had been with him and he had been very peaceful, even opened his eyes and tracked her.
Brittany left for Monmouth at about 5:00. (Brian's older cousin)
10:00 PM The day continued pretty much the same. Brian resting a lot, still sensitive to stimuli, heartrate around 113.
October 14, 2012
I am still amazed at the things I had forgotten. Eyes peeking open, response to stimuli, all the posturing. I do remember talking him through with Marshall. It seemed in my memories that he was deep down and far away. He was underwater and I would talk to him each night as i went to sleep alone in our little Cheney House room. "Good Night, Brian", I would say. I would envision him down under water, floating, waiting for the right time to return to the surface. I was certain he would know when to come up.
9:00 AM Brian is resting comfortably after a fever spike & higher pulse last night. His temperature is back down as is his pulse. he had more posturing episodes overnight but none late this morning. Medication being adjusted still - added morphine to Atavan for relaxation. Still on anti-seizure medicine to maintain and keep from happening. 10:00 More stimulated with some posturing but heartrate not so high and better recovery. Martha & Marshall worked together to talk him through. 1:30 Pulmonologist set of very strong posturing episodes with pulse up to 140 so we gave him some quiet time. Prior to that, Alana had been with him and he had been very peaceful, even opened his eyes and tracked her.
Brittany left for Monmouth at about 5:00. (Brian's older cousin)
10:00 PM The day continued pretty much the same. Brian resting a lot, still sensitive to stimuli, heartrate around 113.
October 14, 2012
I am still amazed at the things I had forgotten. Eyes peeking open, response to stimuli, all the posturing. I do remember talking him through with Marshall. It seemed in my memories that he was deep down and far away. He was underwater and I would talk to him each night as i went to sleep alone in our little Cheney House room. "Good Night, Brian", I would say. I would envision him down under water, floating, waiting for the right time to return to the surface. I was certain he would know when to come up.
Heart Fear
This poem, which I hope you can read, was written by Brian. He started it on October 4, 2001 and finished it October 7, 2001. On October 8th, in his Creative Writing class, he read the poem aloud. That afternoon, the cardiac arrest occurred.
Self-Portrait in Pencil
This is the straight version of Brian's self-portrait, done at the same time as the "abstract" version. This one is 11 x 14 framed. Again, it is not a great reproduction, lacking in detail, but the expression on his face is unmistakable. This version, with the caption, was created by our friend Eric Warren, and used by the students as a fund-raiser. I still have 8 x 11 versions and notecards.
Abstract Self Portait
This is what Brian calls his "Abstract Self-Portrait". It was created in response to an assignment in his art class. The students were to produce a self-portrait. Brian did two versions: this one, and a straight pencil version. They were completed near the end of September, 2001. The original of this one is done in colored pencil, and measures 14 x 22 inches within the mat. These are not very good reproductions; I will try to get better versions in the future. We have the original at our house. I will leave the interpretation up to you. It is the portrait of a young man living in fear.
Saturday, October 13, 2012
Bacterial Pneumonia
Saturday, October 13, 2001
Brian had a more peaceful night - Dave with him all night as in past days - although there were some seizure episodes. He is coughing more to help with clearing the lungs again - having some bronchial bleeding because of the coughing. Good nurses in ICU also but not one-on-one with patients (probably 2 patients per nurse).
8:00 AM Brian very negatively sensitive to stimuli - even hand touches causing small seizures. Even BP cuff triggering seizures. A couple of strong clenching seizures - he blew his IV sites in his right arm.
10:30 AM They are installing a central line to have access for medication. He had been peaceful for about an hour prior.
5:30 PM Brian still resting fairly comfortably. Must now wear gowns, gloves, & masks to visit due to strength of pneumonia - to keep visitors healthy who are weakended from stress, lack of sleep & lack of proper nutrition.
Jesse & Jamie left for Seattle.
Dr. Naris, neurologist, said that he didn't believe Brian was actually having seizures. He thinks the episodes are just due to brain electrical - cortical activity.
Brian was more restful and not reacting negatively to stimuli this evening - able to cough and move without the episodes occurring.
October 13, 2012
The coughing was HORRIBLE to watch. He was helpless and so were we. SO much poison in his body! It was so awful to watch him suffer in that unconscious state. There we were, in those gowns, unable to even touch skin on skin to comfort. My poor boy.
Brian had a more peaceful night - Dave with him all night as in past days - although there were some seizure episodes. He is coughing more to help with clearing the lungs again - having some bronchial bleeding because of the coughing. Good nurses in ICU also but not one-on-one with patients (probably 2 patients per nurse).
8:00 AM Brian very negatively sensitive to stimuli - even hand touches causing small seizures. Even BP cuff triggering seizures. A couple of strong clenching seizures - he blew his IV sites in his right arm.
10:30 AM They are installing a central line to have access for medication. He had been peaceful for about an hour prior.
5:30 PM Brian still resting fairly comfortably. Must now wear gowns, gloves, & masks to visit due to strength of pneumonia - to keep visitors healthy who are weakended from stress, lack of sleep & lack of proper nutrition.
Jesse & Jamie left for Seattle.
Dr. Naris, neurologist, said that he didn't believe Brian was actually having seizures. He thinks the episodes are just due to brain electrical - cortical activity.
Brian was more restful and not reacting negatively to stimuli this evening - able to cough and move without the episodes occurring.
October 13, 2012
The coughing was HORRIBLE to watch. He was helpless and so were we. SO much poison in his body! It was so awful to watch him suffer in that unconscious state. There we were, in those gowns, unable to even touch skin on skin to comfort. My poor boy.
Friday, October 12, 2012
Move to ICU
October 12, 2010
As I review the diary for today, I discover that my memory is slightly faulty: the pneumonia developed before the move from Cardiac Care. It was earlier than I had remembered. The posturing/seizures were more severe than I had recalled, too - or perhaps the remembered fear is from their severity. I know they were more than scary, now that I read the diary ahead a bit. They were terrifying, especially if you had never seen one before (like I hadn't).
Friday, October 12,2012
Roller coaster ride morning. Brian had several seizure episodes, mostly small, all 3 minutes or less - one grand mal seizure. Nurses "practicing medicine without a license" throwing drugs at him to stabilize - valium etc. Dr. Naris, the neurologist, was not overly concerned as the seizures are brief. It is a natural part of brain injury healing for about 50% of patients. Brian may be moved from CCU to ICU to get more specialized brain related treatment since his cardiac care is more under control.
Restful afternoon for all. Martha & Dave both resting. Alana finally went home. Mark to work. Kellie to work. Mary, Jesse, Jamie, David on book mission.
Brian had a couple more seizure episodes - one after move to ICU. Gave him time to rest between visits.
9:00 pm Brian sleeping peacefully.
Jeff called from Mexico at 9:20 PM, had long talks with Martha, Merrikat, & Jamie.
Dr. Naris was exceptional. Very mellow and caring.
Jeff calling was a huge surprise. Somehow he got through to the hall phone in the waiting room area. he was calling from Mexico City, where he lived at the time. he was very upset; first the Twin Towers, now his little brother. This was the little brother he had only met in 1994. It was wonderful to talk to him and I am getting tears in my eyes as I remember that call.
Merrikat is Mary Kathryn, my little sister, who was still keeping this diary I am quoting.
This weekend I will add some pictures and other things.
As I review the diary for today, I discover that my memory is slightly faulty: the pneumonia developed before the move from Cardiac Care. It was earlier than I had remembered. The posturing/seizures were more severe than I had recalled, too - or perhaps the remembered fear is from their severity. I know they were more than scary, now that I read the diary ahead a bit. They were terrifying, especially if you had never seen one before (like I hadn't).
Friday, October 12,2012
Roller coaster ride morning. Brian had several seizure episodes, mostly small, all 3 minutes or less - one grand mal seizure. Nurses "practicing medicine without a license" throwing drugs at him to stabilize - valium etc. Dr. Naris, the neurologist, was not overly concerned as the seizures are brief. It is a natural part of brain injury healing for about 50% of patients. Brian may be moved from CCU to ICU to get more specialized brain related treatment since his cardiac care is more under control.
Restful afternoon for all. Martha & Dave both resting. Alana finally went home. Mark to work. Kellie to work. Mary, Jesse, Jamie, David on book mission.
Brian had a couple more seizure episodes - one after move to ICU. Gave him time to rest between visits.
9:00 pm Brian sleeping peacefully.
Jeff called from Mexico at 9:20 PM, had long talks with Martha, Merrikat, & Jamie.
Dr. Naris was exceptional. Very mellow and caring.
Jeff calling was a huge surprise. Somehow he got through to the hall phone in the waiting room area. he was calling from Mexico City, where he lived at the time. he was very upset; first the Twin Towers, now his little brother. This was the little brother he had only met in 1994. It was wonderful to talk to him and I am getting tears in my eyes as I remember that call.
Merrikat is Mary Kathryn, my little sister, who was still keeping this diary I am quoting.
This weekend I will add some pictures and other things.
Thursday, October 11, 2012
Settling In
Thursday, October 11, 2001
One month anniversary of Tower/Pentagon attack.
Brian had a tough night fighting pneumonia that has spread to the left lung also (was just in right). Put back on assisted breathing so he doesn't have to fight so hard. His pulse has gone back down so he is able to relax a bit. Cardiologist report was that he is improving slowly as he fights the pneumonia. He (cardiologist) wants to continue having the students visit calmly as they have been doing.
Jesse and Jamie finally arrived at about 12:30. Martha immediately calms. Jesse is visibly shaken after seeing Brian.
A lot of "down" time for Brian during the day to rest.
Family conference 4:00 PM - Social worker moderated, unit manager and nurses there too. Laying down the law - time to comply with rules. No more food, no more unsupervised minors, only family and two closest students to visit. Social worker found room for the family at the Cheney House a block away. Checked in. Dinner at Thai restaurant.
Brian may have had seizure - some say yes, one nurse says may just be posturing-type movements because he did similar things later. Sleeping peacefully at 10:00 PM.
October 11, 2012
The double pneumonia came on hard. It caused us all to be more cautious and regulated. I don't recall that we ever totally complied with all rules. Dave and I, my sister, Brian's friends, were all insistent that we be allowed to visit in as normal a manner as possible, with conversation and music. When he was moved out of Cardiac care into the ICU next door (all connected, really), it was about this time and at some point we began decorating his room. The kids did, really. They also played his music for him. This may have been later, though.
Despite that comments about "sleeping", Brian was in an unresponsive coma. The posturing is a phenomenon that occurs during the coma and looks like a seizure. It's pretty scary to watch.
There was a conflict occurring between different factions of the family and this was partly why we had the conference. The hospital was also justifiably concerned about the other patients and we respected that, of course. We tried very hard to never be disrespectful of other patients or the hard work the staff were doing.
When Jesse and Jamie arrived, I was hugely relieved. I needed Jesse there more than I realized. He was very upset, though. This was his little brother. Later he took a break from a class or two (he was a student at the University of Washington) because he needed to back off a bit.
The Cheney House was amazing. It was a place for families to stay while their loved ones were in the hospital receiving care of any sort for an extended time. We were there for six weeks, 'way past the limit (which I think was a month). Dave and I stayed there, in a room with twin beds and a shower equipped for wheelchair access. Everyone had a locked bin for dry goods in the kitchen and a space in the fridge. There was a common room and the folks who worked there were gentle and kind. It was such a relief to have a place close, with people who knew exactly what we were going through.
That dinner at the Thai place down the road was our first meal since Brian had gone down.
Dave and I began our ritual at that time: nights for him, days for me. A round-the-clock vigil with Brian. The Coma Watch.
One month anniversary of Tower/Pentagon attack.
Brian had a tough night fighting pneumonia that has spread to the left lung also (was just in right). Put back on assisted breathing so he doesn't have to fight so hard. His pulse has gone back down so he is able to relax a bit. Cardiologist report was that he is improving slowly as he fights the pneumonia. He (cardiologist) wants to continue having the students visit calmly as they have been doing.
Jesse and Jamie finally arrived at about 12:30. Martha immediately calms. Jesse is visibly shaken after seeing Brian.
A lot of "down" time for Brian during the day to rest.
Family conference 4:00 PM - Social worker moderated, unit manager and nurses there too. Laying down the law - time to comply with rules. No more food, no more unsupervised minors, only family and two closest students to visit. Social worker found room for the family at the Cheney House a block away. Checked in. Dinner at Thai restaurant.
Brian may have had seizure - some say yes, one nurse says may just be posturing-type movements because he did similar things later. Sleeping peacefully at 10:00 PM.
October 11, 2012
The double pneumonia came on hard. It caused us all to be more cautious and regulated. I don't recall that we ever totally complied with all rules. Dave and I, my sister, Brian's friends, were all insistent that we be allowed to visit in as normal a manner as possible, with conversation and music. When he was moved out of Cardiac care into the ICU next door (all connected, really), it was about this time and at some point we began decorating his room. The kids did, really. They also played his music for him. This may have been later, though.
Despite that comments about "sleeping", Brian was in an unresponsive coma. The posturing is a phenomenon that occurs during the coma and looks like a seizure. It's pretty scary to watch.
There was a conflict occurring between different factions of the family and this was partly why we had the conference. The hospital was also justifiably concerned about the other patients and we respected that, of course. We tried very hard to never be disrespectful of other patients or the hard work the staff were doing.
When Jesse and Jamie arrived, I was hugely relieved. I needed Jesse there more than I realized. He was very upset, though. This was his little brother. Later he took a break from a class or two (he was a student at the University of Washington) because he needed to back off a bit.
The Cheney House was amazing. It was a place for families to stay while their loved ones were in the hospital receiving care of any sort for an extended time. We were there for six weeks, 'way past the limit (which I think was a month). Dave and I stayed there, in a room with twin beds and a shower equipped for wheelchair access. Everyone had a locked bin for dry goods in the kitchen and a space in the fridge. There was a common room and the folks who worked there were gentle and kind. It was such a relief to have a place close, with people who knew exactly what we were going through.
That dinner at the Thai place down the road was our first meal since Brian had gone down.
Dave and I began our ritual at that time: nights for him, days for me. A round-the-clock vigil with Brian. The Coma Watch.
Wednesday, October 10, 2012
Tiger
October 10, 2012
So many people are responding to this blog, in person and on Facebook and a phone call from a dear friend. It seems there are many who know. Dear Jessica Erickson has commented that she watched him die that day. It's true. We learned later from one of the EMT's that Brian flatlined more than once while they were applying the paddles - which they did at least six times. And the estimated time he was without oxygen was closer to 20 minutes than ten. A miracle? The will of a power greater than human? Or just the will and strength of an incredible young man who would not go down without a fight?
Wednesday, October 10, 2001
Morning report - pre-doctor assessment - 6:30 AM. Brian is awake, breathing on his own but still minimal response - this is a slow process. Vital signs look great. Temperature back to normal, BP up to normal. Both eyes are open and blinking together, tracking occasionally. Exciting way to start the morning! cardiologist report - Brian is responding to stimuli well. He (doctor) has called in a pulmonary specialist to check the lungs - pneumonia showing on x-rays - may be able to target specific type of pneumonia with a different medication. The doctor did mention the future of not knowing how the brain swelling will affect Brian - maybe different person. Took CT scan in AM - results not back by noon.
Dave slept in motel about 6 hours.
Not a lot of change since morning - continued response with eyes. A tiring day for Brian with scope down lungs - they are clear of foreign objects, just pneumonia. A day of two-at-a-time visits by students and family.
Cardiologist supplemental report - echocardiogram shows no new blockage but growth of septum to 3 cm.
Brian squeezed Alana's hand this evening, request or spontaneous? Has fever again this evening - limit access for rest & to guard against infection. Senior class brought huge stuffed tiger - Brian's heart rate went way up when delivered.
This gets more difficult for me now. I had forgotten the preliminary hope when he seemed to be awake. The pneumonia was a huge scare and instead of grouping in his room to visit we had to schedule by twos. Whenever we visited, from the beginning, we would talk to Brian and have conversations as though he were a conscious ,part of the gathering. We tried to make the situation as normal as possible, given the surroundings: beeping machinery, curtains, nurses and doctors, tubing, fluids, blinking lights, disinfectant, illness.
Alana was Brian's new girlfriend, an incredibly brave young woman who stood by him for weeks.
The cardiac arrest was a result of hypertrophic cardiomyopathy, an enlarged heart. It's complicated and worth a detailed description, but basically Brian's heart muscle was too extensive and it sort of smothered the heart and didn't allow it to function properly. It was not smooth, but crisscrossed like a black widow spider web. Plus, the mitral valve was blocked by the enlarged septum, causing the irregular heartbeat - the murmur that our family physician (Dee Christlieb) first heard when Brian was 14. He sent Brian to the cardiologist (Foster) and Brian was diagnosed the day before his 15th birthday. Happy Birthday, young man. You have a heart condition that could kill you. Out went the tongue piercing that had snuck in his mouth : too much risk of infection.
I remember the tiger so well. Dan Golden, the senior class president, brought it to Brian sometime that night. Later he told us that, when he walked in and spoke to Brian, the heart monitor indicated that Brian's heart rate went up at the sound of Dan's voice. Maybe it was at that point that we all knew we must always be there and keep talking and touching Brian, to help bring him back.
I slept with that tiger every night for most of the next six weeks.
So many people are responding to this blog, in person and on Facebook and a phone call from a dear friend. It seems there are many who know. Dear Jessica Erickson has commented that she watched him die that day. It's true. We learned later from one of the EMT's that Brian flatlined more than once while they were applying the paddles - which they did at least six times. And the estimated time he was without oxygen was closer to 20 minutes than ten. A miracle? The will of a power greater than human? Or just the will and strength of an incredible young man who would not go down without a fight?
Wednesday, October 10, 2001
Morning report - pre-doctor assessment - 6:30 AM. Brian is awake, breathing on his own but still minimal response - this is a slow process. Vital signs look great. Temperature back to normal, BP up to normal. Both eyes are open and blinking together, tracking occasionally. Exciting way to start the morning! cardiologist report - Brian is responding to stimuli well. He (doctor) has called in a pulmonary specialist to check the lungs - pneumonia showing on x-rays - may be able to target specific type of pneumonia with a different medication. The doctor did mention the future of not knowing how the brain swelling will affect Brian - maybe different person. Took CT scan in AM - results not back by noon.
Dave slept in motel about 6 hours.
Not a lot of change since morning - continued response with eyes. A tiring day for Brian with scope down lungs - they are clear of foreign objects, just pneumonia. A day of two-at-a-time visits by students and family.
Cardiologist supplemental report - echocardiogram shows no new blockage but growth of septum to 3 cm.
Brian squeezed Alana's hand this evening, request or spontaneous? Has fever again this evening - limit access for rest & to guard against infection. Senior class brought huge stuffed tiger - Brian's heart rate went way up when delivered.
This gets more difficult for me now. I had forgotten the preliminary hope when he seemed to be awake. The pneumonia was a huge scare and instead of grouping in his room to visit we had to schedule by twos. Whenever we visited, from the beginning, we would talk to Brian and have conversations as though he were a conscious ,part of the gathering. We tried to make the situation as normal as possible, given the surroundings: beeping machinery, curtains, nurses and doctors, tubing, fluids, blinking lights, disinfectant, illness.
Alana was Brian's new girlfriend, an incredibly brave young woman who stood by him for weeks.
The cardiac arrest was a result of hypertrophic cardiomyopathy, an enlarged heart. It's complicated and worth a detailed description, but basically Brian's heart muscle was too extensive and it sort of smothered the heart and didn't allow it to function properly. It was not smooth, but crisscrossed like a black widow spider web. Plus, the mitral valve was blocked by the enlarged septum, causing the irregular heartbeat - the murmur that our family physician (Dee Christlieb) first heard when Brian was 14. He sent Brian to the cardiologist (Foster) and Brian was diagnosed the day before his 15th birthday. Happy Birthday, young man. You have a heart condition that could kill you. Out went the tongue piercing that had snuck in his mouth : too much risk of infection.
I remember the tiger so well. Dan Golden, the senior class president, brought it to Brian sometime that night. Later he told us that, when he walked in and spoke to Brian, the heart monitor indicated that Brian's heart rate went up at the sound of Dan's voice. Maybe it was at that point that we all knew we must always be there and keep talking and touching Brian, to help bring him back.
I slept with that tiger every night for most of the next six weeks.
Tuesday, October 9, 2012
The Coma Watch Begins
10/9/12
Brian Kinkead, my youngest son, was a 17-year-old senior at Ashland High School on October 8, 2001. He was a gifted artist, a top student, a poet. Brian was fluent enough in Spanish that he wanted to attend college and major in Spanish and Art. The previous summer, Brian had been a student ambassador with the People to People program, traveling to Europe. He had a part-time job in a local restaurant, a car with a great stereo system, and a rich social life. He was a typical teenager who pushed all boundaries, as well. All this was lost, including his memories of Europe, on October 8th 2001.
Tuesday, October 9, 2001
Took Brian off sedation temporarily, and he showed signs of purposeful movement to try & take out ventilator tube. Re-restrained and re-sedated. Vital signs good. Coloring good. Back on full ventilator due to probable lung infection - so he doesn't have to work so hard - let the machine do it.
Visitors: Thom Lyttle, Rosemary Kinkead, other Aunt Mary Gardiner, Alana, Chance, Brad, Bonnie, Gretchen, Micah, Zane, Jackie, Darby, Randy, Ahsa's mom, Allie Gardiner, Max, Sarah & Dan Golden, Casey G, Jacob B, Chris, Rachel.
Evening eval - pneumonia being treated with antibiotics; Lydocaine stopped because no sign of heart fibrilations, no retinal response, no pain response (still heavily sedated). No idea of "residual effects" until he is off sedation. Will test in morning. Brain swelling but "not timely" to do CT scan yet - no hematomas. On auto-cooling blanket with temperature monitor to try and break fever. Being given Tylenol also. Worried about liver functions (Tylenol shouldn't cause problems). Monitor liver & kidney functions according to schedule. Will start internal feeding tomorrow.
The visitors were mostly Brian's friends. Rosemary is his paternal grandmother. Mary Gardiner is Marshall's sister and Allie (Ali) is her youngest daughter, who is Brian's age. Some of the kids had known Brian nearly all his/their life/lives. Others were newer. Their devotion and commitment to bringing him back was extraordinary. I don't remember this day. I was awake for so many hours, days, at first, that it is a total blur. I didn't even change out of whatever weird clothes I had on for about three days. We "camped" in one of the conference rooms in ICU. The hospital staff were so very kind and patient with us. We literally took over the waiting rooms.
Brian Kinkead, my youngest son, was a 17-year-old senior at Ashland High School on October 8, 2001. He was a gifted artist, a top student, a poet. Brian was fluent enough in Spanish that he wanted to attend college and major in Spanish and Art. The previous summer, Brian had been a student ambassador with the People to People program, traveling to Europe. He had a part-time job in a local restaurant, a car with a great stereo system, and a rich social life. He was a typical teenager who pushed all boundaries, as well. All this was lost, including his memories of Europe, on October 8th 2001.
Tuesday, October 9, 2001
Took Brian off sedation temporarily, and he showed signs of purposeful movement to try & take out ventilator tube. Re-restrained and re-sedated. Vital signs good. Coloring good. Back on full ventilator due to probable lung infection - so he doesn't have to work so hard - let the machine do it.
Visitors: Thom Lyttle, Rosemary Kinkead, other Aunt Mary Gardiner, Alana, Chance, Brad, Bonnie, Gretchen, Micah, Zane, Jackie, Darby, Randy, Ahsa's mom, Allie Gardiner, Max, Sarah & Dan Golden, Casey G, Jacob B, Chris, Rachel.
Evening eval - pneumonia being treated with antibiotics; Lydocaine stopped because no sign of heart fibrilations, no retinal response, no pain response (still heavily sedated). No idea of "residual effects" until he is off sedation. Will test in morning. Brain swelling but "not timely" to do CT scan yet - no hematomas. On auto-cooling blanket with temperature monitor to try and break fever. Being given Tylenol also. Worried about liver functions (Tylenol shouldn't cause problems). Monitor liver & kidney functions according to schedule. Will start internal feeding tomorrow.
The visitors were mostly Brian's friends. Rosemary is his paternal grandmother. Mary Gardiner is Marshall's sister and Allie (Ali) is her youngest daughter, who is Brian's age. Some of the kids had known Brian nearly all his/their life/lives. Others were newer. Their devotion and commitment to bringing him back was extraordinary. I don't remember this day. I was awake for so many hours, days, at first, that it is a total blur. I didn't even change out of whatever weird clothes I had on for about three days. We "camped" in one of the conference rooms in ICU. The hospital staff were so very kind and patient with us. We literally took over the waiting rooms.
Monday, October 8, 2012
10/8/01
October 8, 2012
This diary was started by my sister, Mary Kathryn Stafford, upon her arrival in Ashland. She had kept a similar diary when a friend was hospitalized after a terrible accident in which he was hit by a car. She kept this one until turning it over to me on October 16th.
I am going to quote the diary verbatim in these entries, with commentary as I go.
I want to mention that on October 6th, 2001, Brian attended the Homecoming Dance at Ashland High School. When I saw him on the 7th, it was at a screening of a film by my friend Marilyn Zornado, at the Ashland Film Festival. The film was "Insect Poetry". Brian was quieter than usual that afternoon, and seemed distressed.
Monday, October 8, 2001
Brian went into cardiac arrest at approx. 2 pm while at a park with friends. 911 was called, rescue breathing administered. Transport to Ashland hospital, transfer to Rogue Valley Medical Center in Medford. Estimated without oxygen 5-10 minutes - residual effects unknown at this time. In Cardiac Care Unit in coma. Approx. 2 doz. students from high school vigil all night - break all rules to show support - pizza, cell phones, singing.
Alana, Mark L, Ahsa, Chelsea, Jessica D., Duncan, David S., Ayal, David V., Bubby, Vanessa D., stayed night.
Alana, Max, David V., Mark L. in car to this hospital initially. Marshall in ambulance. Reesa, Jessica E., Evan, Jacob, Duncan, Joel, Randy, Max, David V., to Ashland Hospital initially. Max Y, Duncan, Evan, Joel Crumme, Jessica E, Risa w/B @ Park. Jacob came during.
Martha, Dave, Marshall, Kellie here - of course. Marshall and Kellie went home at night.
Dr. Foster - cardiologist Dr. Sullivan - neurologist
I received a frantic call from Kellie around 2:15 -2:30, informing me that Brian had gone into arrest and was at the hospital. She kept telling me to remain calm. I was, albeit shocked and scared. I grabbed my purse, got in my 4runner, and drove as fast as I could down Corral Creek Road to the highway, and thence to the worksite a mile or so away where Dave was building Leon Kincaid's house with Tony Henthorn and others. I ran up to them, explained briefly, and Dave jumped in the driver's seat for the 25 mile drive into town. We held hands and hoped.
At Ashland Community Hospital I found a group of Brian's friends. The only one I remember is Randy Fitzpatrick, but I think Risa Roberts, Jessica Erickson and Max Young were there, and others. behind a curtain in a small room was my son on a gurney, quivering and having oxygen pumped into him by hand. I put my arms across the shoulders of Kellie and Marshall and we stood there, watching Brian fight for his life, his body in spasms on that table.
Reese Jones drove the ambulance to Rogue Valley. Marshall sat in back with the oxygen pump, squeezing life into our son. I rode in the passenger seat, trying to keep calm. It was getting harder.
Brian was placed in the Cardiac Care Unit and we began a vigil that lasted for days. That night his art teacher, Marc Schoenleber, joined the rest of us with is guitar. Two of the girls snuck in at around 2 am and painted Brian's toenails purple - all but the one with the oxygen monitor.
It is mostly a blur but I remember all the wonderful kids who stayed the night. The energy in that ICU waiting room was remarkable and filled with love.
This diary was started by my sister, Mary Kathryn Stafford, upon her arrival in Ashland. She had kept a similar diary when a friend was hospitalized after a terrible accident in which he was hit by a car. She kept this one until turning it over to me on October 16th.
I am going to quote the diary verbatim in these entries, with commentary as I go.
I want to mention that on October 6th, 2001, Brian attended the Homecoming Dance at Ashland High School. When I saw him on the 7th, it was at a screening of a film by my friend Marilyn Zornado, at the Ashland Film Festival. The film was "Insect Poetry". Brian was quieter than usual that afternoon, and seemed distressed.
Monday, October 8, 2001
Brian went into cardiac arrest at approx. 2 pm while at a park with friends. 911 was called, rescue breathing administered. Transport to Ashland hospital, transfer to Rogue Valley Medical Center in Medford. Estimated without oxygen 5-10 minutes - residual effects unknown at this time. In Cardiac Care Unit in coma. Approx. 2 doz. students from high school vigil all night - break all rules to show support - pizza, cell phones, singing.
Alana, Mark L, Ahsa, Chelsea, Jessica D., Duncan, David S., Ayal, David V., Bubby, Vanessa D., stayed night.
Alana, Max, David V., Mark L. in car to this hospital initially. Marshall in ambulance. Reesa, Jessica E., Evan, Jacob, Duncan, Joel, Randy, Max, David V., to Ashland Hospital initially. Max Y, Duncan, Evan, Joel Crumme, Jessica E, Risa w/B @ Park. Jacob came during.
Martha, Dave, Marshall, Kellie here - of course. Marshall and Kellie went home at night.
Dr. Foster - cardiologist Dr. Sullivan - neurologist
I received a frantic call from Kellie around 2:15 -2:30, informing me that Brian had gone into arrest and was at the hospital. She kept telling me to remain calm. I was, albeit shocked and scared. I grabbed my purse, got in my 4runner, and drove as fast as I could down Corral Creek Road to the highway, and thence to the worksite a mile or so away where Dave was building Leon Kincaid's house with Tony Henthorn and others. I ran up to them, explained briefly, and Dave jumped in the driver's seat for the 25 mile drive into town. We held hands and hoped.
At Ashland Community Hospital I found a group of Brian's friends. The only one I remember is Randy Fitzpatrick, but I think Risa Roberts, Jessica Erickson and Max Young were there, and others. behind a curtain in a small room was my son on a gurney, quivering and having oxygen pumped into him by hand. I put my arms across the shoulders of Kellie and Marshall and we stood there, watching Brian fight for his life, his body in spasms on that table.
Reese Jones drove the ambulance to Rogue Valley. Marshall sat in back with the oxygen pump, squeezing life into our son. I rode in the passenger seat, trying to keep calm. It was getting harder.
Brian was placed in the Cardiac Care Unit and we began a vigil that lasted for days. That night his art teacher, Marc Schoenleber, joined the rest of us with is guitar. Two of the girls snuck in at around 2 am and painted Brian's toenails purple - all but the one with the oxygen monitor.
It is mostly a blur but I remember all the wonderful kids who stayed the night. The energy in that ICU waiting room was remarkable and filled with love.
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