Tube-free and happy to see Brian
Though it is hard to say which of them is happier!
posted by Jacqui at 2:42 PM
0 comments
Sunday, February 27, 2005
Canada's loss
Yesterday was a good day for Team Shellener. Mom was cogent, witty and alert for most of the day. She ate well, an important step toward getting rid of the feeding tube, and was able to share some basic but important information about her ribs that will decrease how much pain she endures during transfers and therapy.
For the first time, Mom was able to maintain her focus long enough to read some of her cards herself. As she got tired, she had a harder time keeping the lines in order (eg. reading line 1 then 4 then 2) but she still could relate who the cards were from and how people fit into her life. During physical therapy, she stood for 11 minutes twice, taking some hops as well. Mom's strength is better with regard to standing upright and maintaining conversation as she stood.
Mom also admitted for the first time that she is struggling with self-image, concerned that she looks older (64 to be exact even though she is only 53) and frail. Knowing she wouldn't really believe me on this one, I brought this up in front of Kelly and Bill. They were appalled of course and waxed at length over her loveliness. Being Mom, she said 'I don't feel that way. I feel like a female hockey player.' Quite funny.
Well, my morning caffeine is kicking in and it is time to get on over.
Hope you are all having a delightful and lazy Sunday-
j.c.
For the first time, Mom was able to maintain her focus long enough to read some of her cards herself. As she got tired, she had a harder time keeping the lines in order (eg. reading line 1 then 4 then 2) but she still could relate who the cards were from and how people fit into her life. During physical therapy, she stood for 11 minutes twice, taking some hops as well. Mom's strength is better with regard to standing upright and maintaining conversation as she stood.
Mom also admitted for the first time that she is struggling with self-image, concerned that she looks older (64 to be exact even though she is only 53) and frail. Knowing she wouldn't really believe me on this one, I brought this up in front of Kelly and Bill. They were appalled of course and waxed at length over her loveliness. Being Mom, she said 'I don't feel that way. I feel like a female hockey player.' Quite funny.
Well, my morning caffeine is kicking in and it is time to get on over.
Hope you are all having a delightful and lazy Sunday-
j.c.
posted by Jacqui at 8:12 AM
1 comments
Hockey tuff
Frail, my a**!
Note the red cap on her tracheostomy. Next step, no trach! (But probably not till after surgery.)
Note the red cap on her tracheostomy. Next step, no trach! (But probably not till after surgery.)
posted by Jacqui at 8:10 AM
1 comments
Saturday, February 26, 2005
Comrade in arms
This post is dedicated to a fallen comrade in arms, someone we never met but loved just the same.
His parents became very special to us in the time we spent waiting individually and yet together for the chance to sit with our beloveds.
"My wife, Deborah, and I are so happy that you mother is alive and that you have hope.
When I went back to the hospital the day after we talked I was so sorry you weren't there. But I am so glad that you called. Truly.
[Here] is a little something that gives you an idea why our loss is so large." -Bert Kurtin
"The article that I wrote about Jared can be found here... This is the first time that I have gotten an assignment like this before, and I know that reporters are supposed to remain objective to the subjects they are writing about, but it has been difficult. I just hope that I have captured your son's life the way that you knew it.
It's funny, when I was trying to prepare this piece, I turned to my journalism textbook for the chapter on obituaries to get some tips, and the author described it as: "A routine story that no reporter enjoys writing." While I did not enjoy writing the article, I can say that the story was far from routine--after talking with you and his friends, I felt myself uncovering a life that was uniquely your son's.
I just wanted to let you know that before I started doing my interviews, I was looking for any information about Jared that I could find, and I happened to search for him in google. I found the following, which Jared posted on a website after the death of Jessica Pastron, a student at Columbia College.
He wrote: "I didn't know Jessie very well, to me; she was the girlfriend of my little brother's best friend. But even with such a degree of separation, it still pains me to hear this news. From what contact I did have with her, I know in my heart she was a good, kind person. My grievances go out to the family and friends of Jessie. I know that time will be the only remedy for your wounds."
I think that Jared's words say everything that need to be said and I hope that better days are to come for you." -Steven Chen
Please join us in mourning the Kurtin family's loss and keep them in your prayers. Jared's funeral is scheduled for Monday.
-j
posted by Jacqui at 8:53 AM
0 comments
Friday, February 25, 2005
ROK STAR
As you will see in the following photos, man oh man is Mom a ROK STAR. Being Mom, she decided to opt out of the adjustment phase and go directly to the kicking butt phase. Not that this is something that can continue indefinitely. Spikes and plateaus frame the landscape but having such a spike now should dramatically improve her quality of life in the meantime.
Yesterday when I got in, the first thing I noticed was that Mom's trach was capped off. Yes, I mean capped off. She decided to skip the Passy-Muir and go directly to no help breathing. She did well with that all day-no fatigue, no difficulty breathing, able to continue to cough stuff up. If she can maintain this, it is likely that the trach will be pulled soon. A huge improvement in her comfort level as you can imagine.
Mom did an excellent job feeding herself and ate over half her food at each meal. Again, a big deal. We had discussed beforehand the importance of this to get the nasogastric tube out. Goal-oriented person that she is, Mom took right to the task and really impressed her nurses. Should this persist, it is likely the feeding tube will be out soon.
Regarding physical mobility, Mom was able to stand for about 12 minutes yesterday in her first therapy session. Five minutes the first time and seven the second. She wanted to stop at five the second time but hung in an additional two minutes after I explained why it was important. And, in contrast to the previous day, Mom did a great job with standing up straight-boobs out, yoga tall, pilates core activated. Boo yah. Go Mom! She is also doing a heck of a lot better with transfers from the chair to the bed and vice versa and with dressing herself.
Such a superstar!
jacqui
Yesterday when I got in, the first thing I noticed was that Mom's trach was capped off. Yes, I mean capped off. She decided to skip the Passy-Muir and go directly to no help breathing. She did well with that all day-no fatigue, no difficulty breathing, able to continue to cough stuff up. If she can maintain this, it is likely that the trach will be pulled soon. A huge improvement in her comfort level as you can imagine.
Mom did an excellent job feeding herself and ate over half her food at each meal. Again, a big deal. We had discussed beforehand the importance of this to get the nasogastric tube out. Goal-oriented person that she is, Mom took right to the task and really impressed her nurses. Should this persist, it is likely the feeding tube will be out soon.
Regarding physical mobility, Mom was able to stand for about 12 minutes yesterday in her first therapy session. Five minutes the first time and seven the second. She wanted to stop at five the second time but hung in an additional two minutes after I explained why it was important. And, in contrast to the previous day, Mom did a great job with standing up straight-boobs out, yoga tall, pilates core activated. Boo yah. Go Mom! She is also doing a heck of a lot better with transfers from the chair to the bed and vice versa and with dressing herself.
Such a superstar!
jacqui
posted by Jacqui at 7:23 AM
1 comments
Fine Dining
Mom eats her first meal herself. She had some concerns with the menu. We all had concerns regarding the green slime with the nomiker 'Spinach souffle.'
posted by Jacqui at 7:19 AM
0 comments
Dean duties
Here Mom tries to explain what she does as assistant dean.
It was very exciting to me that she remembered that as it is much more recent history than other things we have been discussing.
It was very exciting to me that she remembered that as it is much more recent history than other things we have been discussing.
posted by Jacqui at 7:17 AM
0 comments
Catwalk
So lovely, such attitude, soon she'll be on the catwalk!
posted by Jacqui at 7:15 AM
0 comments
Authentic Asian cuisine
Yesterday I was able to take a little time for myself, a massage at Essential Therapies to help limit my headaches. As I sat watching the lionfish floating in his tank, I could feel so clearly all the feelings I have been ignoring during the frenetic days. These are things I have tried not to write on the site but now I wonder if that is fair to me or to you. This is the journey after all. So here goes.
--------------------
The pain leaks from my heart, sticky and hot like Thai chili paste, in spurts as the pressure becomes too much for the cracks in the heart to resist. It shoots through my arteries in a searing electric flash, wiggles through little capillaries and sticks to the walls of my veins. Thick and burning, it corrodes the veins to ooze into my muscles and gum up my sarcomeres. I can feel it binding up my body, a latent burn like the residual fire in my mouth from the paste. Watching the fish, listening to the trickle of water, feeling the clean stiffness of the robe, the muscles start to work themselves free. The ache becomes more immediate as it is jarred free by the masseuse. He pushes the pain back into the veins and lymphatics, along their path, back through the heart to the lungs from whence it is released.
The fear seizes hold of my breathing, like wasabi, to widen my nostrils and lungs as it grabs my ribs and prevents inhalation. It is fight and flight together. It takes thought to capture the breath, to reach for the salty comfort of friends and loved strangers, their prickly sweetness that of the ginger.
The loss is like food poisoning. It comes as an ache in the night that then reduces the body to tangled writhing and emptiness. Unexpected, it is bewildering and terrifying of its own. This person I discipline myself not to stare at-my mother, my best friend, my confidante-is here. Is breathing. Is better. But right now, she is not there to tell of strange bumps in the night, of failed hopes and abandoned dreams, of new games and pleasures. Again, the soothing sweetness of the ginger is the only remedy. To ease the nausea, the loneliness and weakness. Again, we are each each others remedy.
And Mom feels all these things too. Pain at her isolation and incomprehensibility, fear that she doesn't make sense and will drive us away with her confusion, loss of her strength and stamina and sense of self. We are getting better, all of us, but it doesn't stop the feelings. It is foolish to deny them, to deny the experience, as it is our experience and honesty that allows us to move beyond these gremlins to better futures.
Thank you for being my ginger, my solace. I hope this is a gift I provide you as well.
j
--------------------
The pain leaks from my heart, sticky and hot like Thai chili paste, in spurts as the pressure becomes too much for the cracks in the heart to resist. It shoots through my arteries in a searing electric flash, wiggles through little capillaries and sticks to the walls of my veins. Thick and burning, it corrodes the veins to ooze into my muscles and gum up my sarcomeres. I can feel it binding up my body, a latent burn like the residual fire in my mouth from the paste. Watching the fish, listening to the trickle of water, feeling the clean stiffness of the robe, the muscles start to work themselves free. The ache becomes more immediate as it is jarred free by the masseuse. He pushes the pain back into the veins and lymphatics, along their path, back through the heart to the lungs from whence it is released.
The fear seizes hold of my breathing, like wasabi, to widen my nostrils and lungs as it grabs my ribs and prevents inhalation. It is fight and flight together. It takes thought to capture the breath, to reach for the salty comfort of friends and loved strangers, their prickly sweetness that of the ginger.
The loss is like food poisoning. It comes as an ache in the night that then reduces the body to tangled writhing and emptiness. Unexpected, it is bewildering and terrifying of its own. This person I discipline myself not to stare at-my mother, my best friend, my confidante-is here. Is breathing. Is better. But right now, she is not there to tell of strange bumps in the night, of failed hopes and abandoned dreams, of new games and pleasures. Again, the soothing sweetness of the ginger is the only remedy. To ease the nausea, the loneliness and weakness. Again, we are each each others remedy.
And Mom feels all these things too. Pain at her isolation and incomprehensibility, fear that she doesn't make sense and will drive us away with her confusion, loss of her strength and stamina and sense of self. We are getting better, all of us, but it doesn't stop the feelings. It is foolish to deny them, to deny the experience, as it is our experience and honesty that allows us to move beyond these gremlins to better futures.
Thank you for being my ginger, my solace. I hope this is a gift I provide you as well.
j
posted by Jacqui at 6:39 AM
1 comments
Thursday, February 24, 2005
Fido- a girl's best friend
This morning I sat at Fido, contemplating the posts (your and mine) and other news I have to share. Instead of knuckling down to blogging, I found myself just grateful for this place where I am safe to enjoy the good days, suffer through the bad days, and eat lots of chocolate cake.
'Chocolate cake where?'
'Chocolate cake behind you.'
'Chocolate cake where?'
'Chocolate cake behind you.'
posted by Jacqui at 5:42 PM
2 comments
The Divine Comedy
After 'Got Gotti' last night and a restorative glass of wine with Kelly (a true angel), I hasten to the car, determined to enjoy a bath and early night. There I stand in the light mist and cold, expecting to hear 'Click' and instead I hear 'Clack.' Why clack? The key has decided to give up the ghost.
As I stand staring dumbfounded at the shard in the lock, my eyes raise reflexively toward heaven, 'You have got to be kidding me...'
Luckily I was able to raise Roland on the cell to bring me his key.
As I stand staring dumbfounded at the shard in the lock, my eyes raise reflexively toward heaven, 'You have got to be kidding me...'
Luckily I was able to raise Roland on the cell to bring me his key.
posted by Jacqui at 5:42 PM
0 comments
Forbidden planet
Things definitely are moving at a different pace since we relocated to Stallworth!
Yesterday, after my last post, Mom had another session with OT and ended up standing for a very short period of time (see picture below). This was quite impressive when you think that Mom wasn't even sitting up two days before. She had indeed gotten her trach changed out to a 4mm and it was possible, when concenrtating very carefully, to hear Mom a little when she talked. Heartbreakingly, what she was saying was that she was stupid and she was afraid she wasn't making sense. sigh. How very terrible this must be for her.
The speech therapist came back in in the evening to reevaluate Mom for food and try her again with the Passy-Muir. Mom was quite obstreperous and refused to comply with Amanda's requests. I felt a little sorry for her but suspect that she is used to dealing with patients in this state. Mom did tolerate the Passy-Muir quite well and was cleared to wear it all day. This development also led to us being able to actually hear more of what Mom was saying and, yes, she is correct-she is not making sense all the time. Not that that is unexpected or believed to be permanent. It does correlate well with one of the criteria for a Rancho 5:
'Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.'
Or to view from a different angle, the strange and sinister creatures of the Id are roaming free in Mom's waking mind right now.
Last night, Mom was apparently indulging the Good Fellas part of her personality. Statements like: 'So, the situation is that we need to decide what expensive gift to give her (Amanda) to take care of this.' or 'So, regarding the David Childs matter, what would really help, I think, is a little (finger-rubbing to indicate illicit exchange of monies)' or (my personal favorite so far) 'So what you need to do to find out what they are trying to charge us for this (her hospitalization) and then we just walk away.'
Walk away???
HAH!
Not that I blame her. She is tired and rearranging her house (brain) after a hurricane ripped through it. I quote her, 'The last two days, they have been very hard. I think. Do you agree?' And yes, I agree. Hang tough Mom. You are a ROK STAR!
Yesterday, after my last post, Mom had another session with OT and ended up standing for a very short period of time (see picture below). This was quite impressive when you think that Mom wasn't even sitting up two days before. She had indeed gotten her trach changed out to a 4mm and it was possible, when concenrtating very carefully, to hear Mom a little when she talked. Heartbreakingly, what she was saying was that she was stupid and she was afraid she wasn't making sense. sigh. How very terrible this must be for her.
The speech therapist came back in in the evening to reevaluate Mom for food and try her again with the Passy-Muir. Mom was quite obstreperous and refused to comply with Amanda's requests. I felt a little sorry for her but suspect that she is used to dealing with patients in this state. Mom did tolerate the Passy-Muir quite well and was cleared to wear it all day. This development also led to us being able to actually hear more of what Mom was saying and, yes, she is correct-she is not making sense all the time. Not that that is unexpected or believed to be permanent. It does correlate well with one of the criteria for a Rancho 5:
'Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.'
Or to view from a different angle, the strange and sinister creatures of the Id are roaming free in Mom's waking mind right now.
Last night, Mom was apparently indulging the Good Fellas part of her personality. Statements like: 'So, the situation is that we need to decide what expensive gift to give her (Amanda) to take care of this.' or 'So, regarding the David Childs matter, what would really help, I think, is a little (finger-rubbing to indicate illicit exchange of monies)' or (my personal favorite so far) 'So what you need to do to find out what they are trying to charge us for this (her hospitalization) and then we just walk away.'
Walk away???
HAH!
Not that I blame her. She is tired and rearranging her house (brain) after a hurricane ripped through it. I quote her, 'The last two days, they have been very hard. I think. Do you agree?' And yes, I agree. Hang tough Mom. You are a ROK STAR!
posted by Jacqui at 5:40 PM
1 comments
Sunrise
One of the little advantages of the [obscenely] early rounds at the trauma center was sitting with Mom while the sun rose. With the door shut, it was a quiet island of our own. Even the shadows of the helicopter blades as the injured were rushed in became soothing in this quiet space together.
Just a little present to you to share this moment of mine.
Just a little present to you to share this moment of mine.
posted by Jacqui at 7:23 AM
0 comments
Wednesday, February 23, 2005
The new new room
Okay, guys, where was I? Oh yeah- Mom was working with OT.
She actually did quite well with the OTs. They helped her to the edge of the bed where she was able to provide limited work towards putting on a sock. This was followed by some forward kicks with the OTs. She then stood twice with considerable assistance and a walker. Afterwards, although she was spent, Mom didn't want to lay back down. So the nurses came back about an hour later and put her into something called a 'neuro chair'. This is a gurney that the patient can be slid onto which then folds into a chair. Mom stayed sitting up for about 2 hours before she had had enough. Humorously, in retrospect, Mom gave both Grandma and myself quite a cardiac kickstart when she signaled her interest in returning to bed by faceplanting in her own lap. I hadn't been there when she was put into the chair and did not know she was strapped in at the waist so I was quite concerned she would tumble out at any moment and conk her head. As it was, keeping her in a tolerable position so she could breathe until we got the chair 'transformed' back into a gurney was quite a challenge in and of itself.
Grandma and I decided that Mom needed a rest and we needed a bracing glass of wine after this adventure so we shot over to Houstons for a bite. Well, shot is an overstatement as it was really choice by elimination as we discovered all the restaurants that have closed on West End. Lunch was nice-partially because I got carded (huge ego boost for a newly 32 year old that currently feels senior to Methuselah). Grandma dropped me back toward the hospital and I walked up- needed a little air.
When I reached Mom's room, the phone rang. Curious, I thought, as we had given no one that number. As I suspected it was someone looking for a previous occupant of the room, I went ahead and answered it. A cheerful voice announced that the ambulance would be there in 20 minutes to transport Ms. Shellner.
Surprise! Road trip!
As the nurse dropped in immediately thereafter and I found the call humorous, I shared it with her. Turns out they hadn't known about the impending transfer either. Oops!
A frantic 30 minutes later, Mom was bundled up onto a gurney and wheeled off to the ambulance. Charlene came by to assist me in packing up Mom's things and trying to reach Roland. We scurried off to the client elevator, trundling along Mom's belongings behind us. Mere minutes later, we found ourselves settling into the new new room while I still had the post about the old new room to publish!
Currently, Mom is stationed at Stallworth Rehabilatation Center where she will stay until her orthopedic procedure. It is quite likely she will return there thereafter for further work before she can return home. This is a huge step forward as aggressive rehabilatation is the key to getting Mom home.
Last night I was allowed to stay with Mom so I could get a feel for her days from start to finish. We got to bed about 10:30pm (thanks to Stallworth for use of a rollaway) but we up off and on all night. Mom had a couple nasty coughing jags in the night, partially the result of a new type of respiratory therapy known as HIT (hyperinflation therapy) that will decrease atelectasis (collapse of the little chambers of the lungs) and improve clearance of secretions. It is unpleasant at best but seems to be working.
In spite of restraints, Mom pulled her nasogastric tube again about 4:30am. (I was up at 4 to help her with some airway issues and it was still in place at that time). This led to quite a mess and an entertaining production as both Mom and the bed were stripped, cleaned and rearranged. Unfortunately, we then had the joy of tube replacement, my new least favorite thing. It is remarkably unpleasant, stimulates nasty coughing jags and eventually both Mom and I end up crying. But it is essential that Mom get the nutrition she needs so she can heal so we just suffer through and squeeze each others' hands until it is over. That done, Mom immediately needed deep suctioning to clear her trach and then remained quite restless till 6:00am. She finally quieted down just about the time the phlebotomists came in to stick her for blood work. Sigh. No wonder she's tired. Its killing me! :-|
Today has gotten off with a bang as Mom has had another course of HIT and a couple visits with speech therapy. She still is desaturating rapidly when the Passy-Muir is attached so they hope to downsize her trach to a 4mm in the next day to improve her ability to communicate.
Finally, for the med heads, I have learned a new scoring system- the Rancho Los Amigos Scale. This is a scale to 8 (or 10) with 1 being unresponsive and 10 being basically normal. Right now, Mom is probably a 5, though this is expected to wax and wane as she heals with [hopefully] an overall trend upward.
As Mom is going to be pushed very hard at Stallworth, please respect our wishes and wait to be invited to visit. This is key for Mom as it ensures that visits do not delay or negatively impact therapy. In addition, it is very important that we allow Mom as much control over her life as possible right now. Therefore, only people she expresses interest in seeing will be invited to visit so that she can feel she is calling the shots. The front desk, nurses station and nursing staff all recommend and support this course and will turn you away if you come to visit without them receiving prior authorization by me. Please be patient and remember that this is not about you or me, it is about her.
Thanks again for all the supportive comments and cards. Every day I am humbled anew by your compassion and ability to identify needs we did not even realize we had. THANK YOU THANK YOU THANK YOU!!!
With love overflowing-
jax
She actually did quite well with the OTs. They helped her to the edge of the bed where she was able to provide limited work towards putting on a sock. This was followed by some forward kicks with the OTs. She then stood twice with considerable assistance and a walker. Afterwards, although she was spent, Mom didn't want to lay back down. So the nurses came back about an hour later and put her into something called a 'neuro chair'. This is a gurney that the patient can be slid onto which then folds into a chair. Mom stayed sitting up for about 2 hours before she had had enough. Humorously, in retrospect, Mom gave both Grandma and myself quite a cardiac kickstart when she signaled her interest in returning to bed by faceplanting in her own lap. I hadn't been there when she was put into the chair and did not know she was strapped in at the waist so I was quite concerned she would tumble out at any moment and conk her head. As it was, keeping her in a tolerable position so she could breathe until we got the chair 'transformed' back into a gurney was quite a challenge in and of itself.
Grandma and I decided that Mom needed a rest and we needed a bracing glass of wine after this adventure so we shot over to Houstons for a bite. Well, shot is an overstatement as it was really choice by elimination as we discovered all the restaurants that have closed on West End. Lunch was nice-partially because I got carded (huge ego boost for a newly 32 year old that currently feels senior to Methuselah). Grandma dropped me back toward the hospital and I walked up- needed a little air.
When I reached Mom's room, the phone rang. Curious, I thought, as we had given no one that number. As I suspected it was someone looking for a previous occupant of the room, I went ahead and answered it. A cheerful voice announced that the ambulance would be there in 20 minutes to transport Ms. Shellner.
Surprise! Road trip!
As the nurse dropped in immediately thereafter and I found the call humorous, I shared it with her. Turns out they hadn't known about the impending transfer either. Oops!
A frantic 30 minutes later, Mom was bundled up onto a gurney and wheeled off to the ambulance. Charlene came by to assist me in packing up Mom's things and trying to reach Roland. We scurried off to the client elevator, trundling along Mom's belongings behind us. Mere minutes later, we found ourselves settling into the new new room while I still had the post about the old new room to publish!
Currently, Mom is stationed at Stallworth Rehabilatation Center where she will stay until her orthopedic procedure. It is quite likely she will return there thereafter for further work before she can return home. This is a huge step forward as aggressive rehabilatation is the key to getting Mom home.
Last night I was allowed to stay with Mom so I could get a feel for her days from start to finish. We got to bed about 10:30pm (thanks to Stallworth for use of a rollaway) but we up off and on all night. Mom had a couple nasty coughing jags in the night, partially the result of a new type of respiratory therapy known as HIT (hyperinflation therapy) that will decrease atelectasis (collapse of the little chambers of the lungs) and improve clearance of secretions. It is unpleasant at best but seems to be working.
In spite of restraints, Mom pulled her nasogastric tube again about 4:30am. (I was up at 4 to help her with some airway issues and it was still in place at that time). This led to quite a mess and an entertaining production as both Mom and the bed were stripped, cleaned and rearranged. Unfortunately, we then had the joy of tube replacement, my new least favorite thing. It is remarkably unpleasant, stimulates nasty coughing jags and eventually both Mom and I end up crying. But it is essential that Mom get the nutrition she needs so she can heal so we just suffer through and squeeze each others' hands until it is over. That done, Mom immediately needed deep suctioning to clear her trach and then remained quite restless till 6:00am. She finally quieted down just about the time the phlebotomists came in to stick her for blood work. Sigh. No wonder she's tired. Its killing me! :-|
Today has gotten off with a bang as Mom has had another course of HIT and a couple visits with speech therapy. She still is desaturating rapidly when the Passy-Muir is attached so they hope to downsize her trach to a 4mm in the next day to improve her ability to communicate.
Finally, for the med heads, I have learned a new scoring system- the Rancho Los Amigos Scale. This is a scale to 8 (or 10) with 1 being unresponsive and 10 being basically normal. Right now, Mom is probably a 5, though this is expected to wax and wane as she heals with [hopefully] an overall trend upward.
As Mom is going to be pushed very hard at Stallworth, please respect our wishes and wait to be invited to visit. This is key for Mom as it ensures that visits do not delay or negatively impact therapy. In addition, it is very important that we allow Mom as much control over her life as possible right now. Therefore, only people she expresses interest in seeing will be invited to visit so that she can feel she is calling the shots. The front desk, nurses station and nursing staff all recommend and support this course and will turn you away if you come to visit without them receiving prior authorization by me. Please be patient and remember that this is not about you or me, it is about her.
Thanks again for all the supportive comments and cards. Every day I am humbled anew by your compassion and ability to identify needs we did not even realize we had. THANK YOU THANK YOU THANK YOU!!!
With love overflowing-
jax
posted by Jacqui at 9:37 AM
1 comments
Tuesday, February 22, 2005
The old new room
Otherwise known as 'Girl interrupted':
----------------
As you will see in the following series of pictures, the new room is much more welcoming. In addition, we have had good luck so far in getting to keep the same nurse a couple days. Our current nurse is Julie and she is quite delightful. She has also been very welcoming of our self-empowered attitude.
Mom has been pretty tired so far today. After my post yesterday, she was awake for almost 4 hours straight. She also was trialed with the trach valve but failed. The speech therapists are expected back today or tomorrow to try again. Between the busy social schedule and all the work, I think it tuckered her out. Not that this is surprising. As we all know, Mom generally has a setback on the day following a good day. The good days overall are continue to get so much better and the bad days aren't that awful right now.
In the photos below, the people below are some of Mom's OTs (occupational therapists)- they are working with Mom to get her moving again and get a feel for any physical neurologic deficits she may have.
----------------
I got interrupted here and actually cannot finish the post tonight but wnated you to have this much. I will finish the update in the morning.
With love-
jacqui
----------------
As you will see in the following series of pictures, the new room is much more welcoming. In addition, we have had good luck so far in getting to keep the same nurse a couple days. Our current nurse is Julie and she is quite delightful. She has also been very welcoming of our self-empowered attitude.
Mom has been pretty tired so far today. After my post yesterday, she was awake for almost 4 hours straight. She also was trialed with the trach valve but failed. The speech therapists are expected back today or tomorrow to try again. Between the busy social schedule and all the work, I think it tuckered her out. Not that this is surprising. As we all know, Mom generally has a setback on the day following a good day. The good days overall are continue to get so much better and the bad days aren't that awful right now.
In the photos below, the people below are some of Mom's OTs (occupational therapists)- they are working with Mom to get her moving again and get a feel for any physical neurologic deficits she may have.
----------------
I got interrupted here and actually cannot finish the post tonight but wnated you to have this much. I will finish the update in the morning.
With love-
jacqui
posted by Jacqui at 10:15 AM
2 comments
Our space
If you don't see a particular item, remember there are still a number of things in transit!
posted by Jacqui at 10:14 AM
0 comments
Monday, February 21, 2005
Worm
Today has started with a big morning.
First off, let me register now (and we will never speak of it again- maybe) my distaste for superhuman early mornings. The early birds are welcome to their fare- I want no part of it. Getting up at 5:15 for the privilege of racing round like a spastic child to make it to Vandy in time for morning rounds (6:15am) is no picnic. Though getting the opportunity to hear what the doctors are thinking firsthand and advocate for Mom's needs and wishes certainly makes up for a lot.
Second, has anyone considered discussing with the Department of Transportation and Highway Works the benefit of NOT simultaneously tearing up every road and interstate between the east and west sides of town? Currently, the junction of old Lebanon Pike and Lebanon Pike does not exist, McGavock Pike is impassible above Lincoya as they are replacing the railroad crossing, the Two Rivers entrance to Briley looks like a toddler assaulted it with Tonka trucks, the entrance to 40 from Briley has been rent asunder and I continue to be bitter that they eliminated the death trap 3 lane crossing to get to 440 from the 40 merge. Other than those minor points, though, the drive was delightful. It was fabulous to have a break from the bumper-to-bumper suicide drivers in LA.
Mom was sleeping when I arrived-Hah! To be so lucky. So I just straddled the chair and braced myself on the rail so I could hold her hand while she slept. It was peaceful to watch the sun struggle to rise from behind the storm clouds through her window. When she woke, Mom gave me a hug. Awkward but priceless. We rested awhile before I gave her her morning massage and convinced her to eat some pureed sausage. Delightful.
The doctors came through for their rounds. No big surprises. They are still unsure whether they are going to cut the ankle soon but probably will wait a couple more weeks for the swelling to go down a bit further. They are hopeful that she will be able to move to a rehab center within the week.
Roland came over for a visit once Mom was awake. She wanted to know what day it was so Roland told her. He explained how all the other family had been to visit and were back home right now but that I was staying with him. She either said 'Thank you' or 'Thank God.' Hard to say. Her expression was funny either way. Being the smartaleck she is, she asked if we had been having fun. I asked her if she had lost her mind but Roland pointed out, rightly so, that any time with Mom was a good time. We just asked that she not go to such dramatic extremes again.
Speech therapy came to visit and see Mom's potential for going to a valve system on her trach. She did very well for them; we were all impressed. Hopefully they will fit the valve today so that she doesn't have to depend on my clueless lipreading any longer. She indicated she felt the same way. :-)
Once they had left, Mom asked why she was so sick. I tried to bring her up to speed but am not certain how much she heard. She was quite exhausted from the speech therapy session. We assured her we would just tell her again later if she forgot and left her so she could get some rest.
I am going to stop by the Stallworth center on my way back over to the hospital. I will let you guys know how it looks. In the meantime, for those who would like, Mom can receive balloons again. [We are staying away from flowers till her trach is out.] They can be delivered to the Trauma Center at the Vanderbilt University Medical Center. Anything else should probably go to the house so that we can make sure she gets it.
Well, I am off for the hospital. I'll get you guys some new pictures here soon. I am as ever yours-
jacqui
First off, let me register now (and we will never speak of it again- maybe) my distaste for superhuman early mornings. The early birds are welcome to their fare- I want no part of it. Getting up at 5:15 for the privilege of racing round like a spastic child to make it to Vandy in time for morning rounds (6:15am) is no picnic. Though getting the opportunity to hear what the doctors are thinking firsthand and advocate for Mom's needs and wishes certainly makes up for a lot.
Second, has anyone considered discussing with the Department of Transportation and Highway Works the benefit of NOT simultaneously tearing up every road and interstate between the east and west sides of town? Currently, the junction of old Lebanon Pike and Lebanon Pike does not exist, McGavock Pike is impassible above Lincoya as they are replacing the railroad crossing, the Two Rivers entrance to Briley looks like a toddler assaulted it with Tonka trucks, the entrance to 40 from Briley has been rent asunder and I continue to be bitter that they eliminated the death trap 3 lane crossing to get to 440 from the 40 merge. Other than those minor points, though, the drive was delightful. It was fabulous to have a break from the bumper-to-bumper suicide drivers in LA.
Mom was sleeping when I arrived-Hah! To be so lucky. So I just straddled the chair and braced myself on the rail so I could hold her hand while she slept. It was peaceful to watch the sun struggle to rise from behind the storm clouds through her window. When she woke, Mom gave me a hug. Awkward but priceless. We rested awhile before I gave her her morning massage and convinced her to eat some pureed sausage. Delightful.
The doctors came through for their rounds. No big surprises. They are still unsure whether they are going to cut the ankle soon but probably will wait a couple more weeks for the swelling to go down a bit further. They are hopeful that she will be able to move to a rehab center within the week.
Roland came over for a visit once Mom was awake. She wanted to know what day it was so Roland told her. He explained how all the other family had been to visit and were back home right now but that I was staying with him. She either said 'Thank you' or 'Thank God.' Hard to say. Her expression was funny either way. Being the smartaleck she is, she asked if we had been having fun. I asked her if she had lost her mind but Roland pointed out, rightly so, that any time with Mom was a good time. We just asked that she not go to such dramatic extremes again.
Speech therapy came to visit and see Mom's potential for going to a valve system on her trach. She did very well for them; we were all impressed. Hopefully they will fit the valve today so that she doesn't have to depend on my clueless lipreading any longer. She indicated she felt the same way. :-)
Once they had left, Mom asked why she was so sick. I tried to bring her up to speed but am not certain how much she heard. She was quite exhausted from the speech therapy session. We assured her we would just tell her again later if she forgot and left her so she could get some rest.
I am going to stop by the Stallworth center on my way back over to the hospital. I will let you guys know how it looks. In the meantime, for those who would like, Mom can receive balloons again. [We are staying away from flowers till her trach is out.] They can be delivered to the Trauma Center at the Vanderbilt University Medical Center. Anything else should probably go to the house so that we can make sure she gets it.
Well, I am off for the hospital. I'll get you guys some new pictures here soon. I am as ever yours-
jacqui
posted by Jacqui at 9:33 AM
0 comments
Sunday, February 20, 2005
Driving tour
In celebration of home internet service, I bring you on a tour of our LA.
As you will recall, the route to the hospital went as follows:
Drive down Grand Avenue...
As you will recall, the route to the hospital went as follows:
Drive down Grand Avenue...
posted by Jacqui at 8:03 PM
0 comments
Past 'The Hospital'
otherwise known as Los Angeles Mens Correctional facility
posted by Jacqui at 7:59 PM
0 comments
and right at the Wan Wing Sang Mortuary
with the hotel again on the right. Hope you have enjoyed this tour of our trip...
posted by Jacqui at 6:17 PM
0 comments
Whipped puppies
Man, oh man.
Being home is great. Really it is. But boy are we whipped. It is remarkably taxing just getting caught up on the little trivial incidentals (laundry, bathing, sleep, mail). Email is currently a challenge though I have discovered WiFi at a great little coffee shop called Fido. (Yes, I promise I'll bring Tshirts back when I get back to Colorado for all the vet types.)
And Mom feels the same way. There has been a lot of doing the last 48 hours for her-new tests, new doctors to break in, nurses to charm and so on. Medically, she is doing a bit better. The clot in her arm seems to be improving a smidge (and her INR is in the therapeutic range so they are stopping the heparin injections and just going with coumadin). The ophthalmologists came by this morning and are a bit concerned that she probably has lost part of her field of vision on the left but the only thing that can be done is to wait and see how much.
On the social side, Mom made fast friends with Jonelle, one of her flight nurses. Jonelle allowed her a break from the blood pressure cuff between readings and Mom was so pleased she blew her a huge theatrical kiss, arm and all. She then tried to use the windowframe on the plane to pull herself into a sitting position, which we had to nix, but Jonelle complimented Mom on her strength. It is unfortunate that I did not have the camera ready as Mom made a great boxing fist and bulged out her bicep. Delightful to see that Pammy Jo sass.
Today's nurses reported that Mom was quite perky earlier on and enjoyed showing off all her 'toys'- or least those that have arrived so far. There are a number still in transit from LA. She also took the opportunity to try and set up one of the nurses last night with Roland's son James. Not that Elliott's husband would be pleased to hear that!
-------------
Sundry sundries:
Thank you all for the wonderful posts and nagging remarks. I am indeed going to try and get a little more 'me' time to sleep the next day or so. I have taken careful note of all the offers of help and will post needs once I have figured out what they are! [Those of you on campus beware! You may find me a visitor in search of a quiet space now and then...]
Humorously, as hopefully you all have figured out by mow, I have only just realized that the community chorus is VCC and the university chorus is VUCC. oops. I kinda swapped them in an earlier post which I am positive caused some confusion and stir. Sorry!
Well, we promised Mom we'd be back soon so I better sign off. I will try and write again later tonight.
Love you all (even the ones I only know through the ether so far)-
jacqui
Being home is great. Really it is. But boy are we whipped. It is remarkably taxing just getting caught up on the little trivial incidentals (laundry, bathing, sleep, mail). Email is currently a challenge though I have discovered WiFi at a great little coffee shop called Fido. (Yes, I promise I'll bring Tshirts back when I get back to Colorado for all the vet types.)
And Mom feels the same way. There has been a lot of doing the last 48 hours for her-new tests, new doctors to break in, nurses to charm and so on. Medically, she is doing a bit better. The clot in her arm seems to be improving a smidge (and her INR is in the therapeutic range so they are stopping the heparin injections and just going with coumadin). The ophthalmologists came by this morning and are a bit concerned that she probably has lost part of her field of vision on the left but the only thing that can be done is to wait and see how much.
On the social side, Mom made fast friends with Jonelle, one of her flight nurses. Jonelle allowed her a break from the blood pressure cuff between readings and Mom was so pleased she blew her a huge theatrical kiss, arm and all. She then tried to use the windowframe on the plane to pull herself into a sitting position, which we had to nix, but Jonelle complimented Mom on her strength. It is unfortunate that I did not have the camera ready as Mom made a great boxing fist and bulged out her bicep. Delightful to see that Pammy Jo sass.
Today's nurses reported that Mom was quite perky earlier on and enjoyed showing off all her 'toys'- or least those that have arrived so far. There are a number still in transit from LA. She also took the opportunity to try and set up one of the nurses last night with Roland's son James. Not that Elliott's husband would be pleased to hear that!
-------------
Sundry sundries:
Thank you all for the wonderful posts and nagging remarks. I am indeed going to try and get a little more 'me' time to sleep the next day or so. I have taken careful note of all the offers of help and will post needs once I have figured out what they are! [Those of you on campus beware! You may find me a visitor in search of a quiet space now and then...]
Humorously, as hopefully you all have figured out by mow, I have only just realized that the community chorus is VCC and the university chorus is VUCC. oops. I kinda swapped them in an earlier post which I am positive caused some confusion and stir. Sorry!
Well, we promised Mom we'd be back soon so I better sign off. I will try and write again later tonight.
Love you all (even the ones I only know through the ether so far)-
jacqui
posted by Jacqui at 1:28 PM
3 comments
Saturday, February 19, 2005
Radio silence and migratory birds
Jeez, like 48 hours with no postings. Bet you guys all think that I have fallen off the earth.
Well, there is a good explanation. Really. No foolin'.
With regard to all the dead air, the trick has not been not wanting to write but not having capacity. You see, we have been embroiled in quite a mini-adventure inside the larger voyage. Yesterday, as of noon, we started on a migratory path home. Roland left for LAX right around ten. Meanwhile, Mom and I waited around chatted at the hospital until approximately noon. At that time, the Lifeflight crew arrived with local paramedics to begin the transfer process. As you will see in the following series of images, it was quite an adventure.
We arrived at Vanderbilt about 9pm and were met by Jennifer Stein, assistant to Harry Jacobsen. She was incredibly helpful in facilitating the smooth transfer. About that time we were also met by Mom's new attending, Dr John Morris, Chair of the Trauma department. Wow. And he wasn't even on service... I stayed with Mom to get her settled in before zipping out for a quick bite to eat with Bill and Kelly (true angels). I then returned to the hospital to cuddle Mom while the Christies went to the airport to pick up Roland. They made it back to the hospital right before midnight but Mom was then in a little procedure. We had to wait till almost 1:30 for Roland to be able to say a quick hello. Home by ~2:15 and to bed about time for the roosters to rise. Woken in the night by the nurse who hadn't realized we'd gone and called to give an update.
Up again too early and spent a little time trying to get sorted out before heading back over to Vandy. Mom totally whipped when we arrived, having just finished physical therapy. They already had her sitting up on the edge of the bed and practicing brushing her teeth. We stayed just a little while to say hello then Mom was off again for repeat CTs of her ankle and face. A couple hours of critical errands then back to the hospital for a more animated visit. Mom awake this time for her visit with Mickey (her Mom). A real relief for Grandma to see we hadn't been misleading her about Mom's progress. Mom still very very tired so the visit was limited. Heck, I am still very very tired and I didn't make the trip with fractured ribs, a shattered ankle and a healing brain injury. Sheesh.
So, I know you are all wondering and waiting for me to tell you what this means with regard to visiting Mom and showering her with presents. Currently, unfortunately, not much.
Mom is way too whipped from the trip for visits and the Trauma CCU prohibits visits from non-family members. Given that the Vandy team may want to start reconstruction of her ankle within the week, it is essential that Pam receive as much rest as humanly possible. We ask, therefore, your patience with regard to visits. Once we feel that Mom is more stable from her trip, I will work out some sort of graduated visitation schedule so you can all catch up with her. For now, please content youself with updates through the site and know I read all your cards to her as she is awake. Also, please refrain from calling the home number as we will rarely be there and will have limited reserves for checking messages. With regards to cards etc., the best address to use is probably the home address (3214 Merlyn Lane, 37214).
Thank you, thank you, thank you for all your patience, love and prayers. I look forward to filling you in on the sundry and sordid details of our trip as I get caught up on sleep. Feeling the joy of Southern soils and hospitality-
jackie chris
Well, there is a good explanation. Really. No foolin'.
With regard to all the dead air, the trick has not been not wanting to write but not having capacity. You see, we have been embroiled in quite a mini-adventure inside the larger voyage. Yesterday, as of noon, we started on a migratory path home. Roland left for LAX right around ten. Meanwhile, Mom and I waited around chatted at the hospital until approximately noon. At that time, the Lifeflight crew arrived with local paramedics to begin the transfer process. As you will see in the following series of images, it was quite an adventure.
We arrived at Vanderbilt about 9pm and were met by Jennifer Stein, assistant to Harry Jacobsen. She was incredibly helpful in facilitating the smooth transfer. About that time we were also met by Mom's new attending, Dr John Morris, Chair of the Trauma department. Wow. And he wasn't even on service... I stayed with Mom to get her settled in before zipping out for a quick bite to eat with Bill and Kelly (true angels). I then returned to the hospital to cuddle Mom while the Christies went to the airport to pick up Roland. They made it back to the hospital right before midnight but Mom was then in a little procedure. We had to wait till almost 1:30 for Roland to be able to say a quick hello. Home by ~2:15 and to bed about time for the roosters to rise. Woken in the night by the nurse who hadn't realized we'd gone and called to give an update.
Up again too early and spent a little time trying to get sorted out before heading back over to Vandy. Mom totally whipped when we arrived, having just finished physical therapy. They already had her sitting up on the edge of the bed and practicing brushing her teeth. We stayed just a little while to say hello then Mom was off again for repeat CTs of her ankle and face. A couple hours of critical errands then back to the hospital for a more animated visit. Mom awake this time for her visit with Mickey (her Mom). A real relief for Grandma to see we hadn't been misleading her about Mom's progress. Mom still very very tired so the visit was limited. Heck, I am still very very tired and I didn't make the trip with fractured ribs, a shattered ankle and a healing brain injury. Sheesh.
So, I know you are all wondering and waiting for me to tell you what this means with regard to visiting Mom and showering her with presents. Currently, unfortunately, not much.
Mom is way too whipped from the trip for visits and the Trauma CCU prohibits visits from non-family members. Given that the Vandy team may want to start reconstruction of her ankle within the week, it is essential that Pam receive as much rest as humanly possible. We ask, therefore, your patience with regard to visits. Once we feel that Mom is more stable from her trip, I will work out some sort of graduated visitation schedule so you can all catch up with her. For now, please content youself with updates through the site and know I read all your cards to her as she is awake. Also, please refrain from calling the home number as we will rarely be there and will have limited reserves for checking messages. With regards to cards etc., the best address to use is probably the home address (3214 Merlyn Lane, 37214).
Thank you, thank you, thank you for all your patience, love and prayers. I look forward to filling you in on the sundry and sordid details of our trip as I get caught up on sleep. Feeling the joy of Southern soils and hospitality-
jackie chris
posted by Jacqui at 8:25 PM
3 comments
Jonelle pets Mom
She doesn't know I noticed, but she was always touching Mom. The caring was palpable.
posted by Jacqui at 6:20 PM
0 comments
Thursday, February 17, 2005
Swirley whirley birds
Tonight, as Roland and I stood on the 'deck' overlooking the 'scenic Chinese atmosphere', I found myself overcome with little thoughts that swirl in my head like so many tiny birds. Snippets of conversation, special moments.
Your mother is very strong. [Nurse to me.]
I love you more than life itself. [Mom to Rol before her flight.]
Ay, Mami, I know it is hard. Here I will help you. [As the nurse gently rubs Mom's chest.]
Your Mom, my thoughts, to God. [Ember, our supersecret special waitress at the Irish pub.]
I would transplant my heart for you. [Me to my Mom on Valentine's Day.]
In all my years here, I have never seen a patient get mail before. [Nurse remarking on the truckload of mail that arrived in one day for Mom.]
The list goes on and on and on. Memories of special moments flit in and out of focus. My Mom holding me as I sobbed for hours and hours after a horrible tragedy. Her equanimity during frequent phonecalls regarding the heating system at Andrew Price. A rousing rendition of the Twelve Days of Christmas at Darfons one year that almost got us kicked out. Rol and company singing 'Goodnight ladies' after we did get kicked out another day. Her bravery one day as she tried to save a child's life. The terrible terrible red wine at the Chinese place.
So many moments of history, so many more to come of future.
With love, in reflection,
jackie chris
Your mother is very strong. [Nurse to me.]
I love you more than life itself. [Mom to Rol before her flight.]
Ay, Mami, I know it is hard. Here I will help you. [As the nurse gently rubs Mom's chest.]
Your Mom, my thoughts, to God. [Ember, our supersecret special waitress at the Irish pub.]
I would transplant my heart for you. [Me to my Mom on Valentine's Day.]
In all my years here, I have never seen a patient get mail before. [Nurse remarking on the truckload of mail that arrived in one day for Mom.]
The list goes on and on and on. Memories of special moments flit in and out of focus. My Mom holding me as I sobbed for hours and hours after a horrible tragedy. Her equanimity during frequent phonecalls regarding the heating system at Andrew Price. A rousing rendition of the Twelve Days of Christmas at Darfons one year that almost got us kicked out. Rol and company singing 'Goodnight ladies' after we did get kicked out another day. Her bravery one day as she tried to save a child's life. The terrible terrible red wine at the Chinese place.
So many moments of history, so many more to come of future.
With love, in reflection,
jackie chris
posted by Jacqui at 11:06 PM
3 comments
Cuppa Joe
Okay. Now that Mom has had her day to shine in pictures, I will bring everyone up to speed on the current state of affairs medically...
Complications first:
Mom has developed a long large clot in her right arm that extends from the elbow to the armpit. It is definitely not a good thing but is something that can be treated medically.The process involves Mom receiving shots that will decrease her ability to form new clots so that her body can devote itself to breaking down the big one in her arm. It will probably take a long time for the clot to fully resolve and will be a concern until lit is gone as it is above where the IVC filter is placed. But this is definitely something that can be addressed.
It is pretty certain at this point that Mom did have a bout of pneumonia, probably when her temperature and white count were up. The Xrays that showed 'cloudiness' in the right lung a few days later support this. For all the non-medical types reading the blog, one interesting thing about chest Xrays is that changes in the lungs often lag about 3 days behind what is actually happening. So Xrays can be normal with pneumonia if it is early and can be abnormal after it is gone. This is important to understand as we suspect that the pneumonia is getting better even though it is only lately present on Xrays. Knowing that Mom has been fighting pneumonia, the doctors will probably want to be very conservative in deciding when to remove the tracheostomy tube as that allows them to easily suction off the exudate (goo) from her infection. In addition, the secretions will probably get significantly worse for a day or two when Mom is transferred as they are jarred loose by the movement. In the long run, this will be good but it will probably make for a couple stressful days when we get back and so we preemptively ask for your patience when that time comes with regard to visits and calls.
Last night, Mom finally got the MRI of her neck and so she was a bit dopey this morning. There was evidence of ligamentous injury on the study and so Mom will have to continue wearing the collar for a number of weeks. It is disappointing that she has to stay in the collar but very good that they were conservative and ran the MRI. Otherwise she might further injure the area while it is healing.
Now for good news:
Mom is really starting to wake up. Yesterday she was sleepy all morning but finally became alert in the late afternoon. At that time, while Brian was in with her, she started coughing badly. Before Brian could ask if she needed suction, she grabbed the sign Roland made her and pointed to suction. The nurse, Kevin, was there and was able to take care of it immediately. [We love Kevin by the way- he was super with Mom.] She went on to use the sign again two or three more times, so we really felt confident that she could read it and process its purpose.
This afternoon the sign was made redundant. Mom has a lot more focus with her speaking and my eyes are doing better at lipreading so we are over the sign. Poor sign. One brief flash of glory then resigned to the landfill.
Brian had to leave today. It was very sad for all of us. He will be joining us again in Nashville as needed but it felt so very strange. The ride back from the airport was quite peculiar for both Rol and me. It was the first time, since this remarkable journey began, that the three of us were not together. Not that we will ever be apart again. Brian and Mom got some good time together last night and this morning. She understood that he needed to get back to little Hailey.
Tonight's super-spectacular moment came when Roland and I went in to say hello. As is our custom when we arrive, I futz edwith this and that while Roland had his hello (then I usually sneak in for mine). Roland and I had picked up coffee on the way in and Roland took a sip before taking off his jacket. Mom's eyes lit up and she fairly shouted 'Is that coffee?' if it is possible to shout without making noise. Roland looked quite startled and said, 'Yes it is, honey.' So eager, Mom queried, 'Can I have some?' and was quite wroth when we had to deny her. Quite a positive thing for Roland as well to see that Mom is really in there.
Looking forward to sharing more of the journey as time permits. With love, as always,
jacqui
Complications first:
Mom has developed a long large clot in her right arm that extends from the elbow to the armpit. It is definitely not a good thing but is something that can be treated medically.The process involves Mom receiving shots that will decrease her ability to form new clots so that her body can devote itself to breaking down the big one in her arm. It will probably take a long time for the clot to fully resolve and will be a concern until lit is gone as it is above where the IVC filter is placed. But this is definitely something that can be addressed.
It is pretty certain at this point that Mom did have a bout of pneumonia, probably when her temperature and white count were up. The Xrays that showed 'cloudiness' in the right lung a few days later support this. For all the non-medical types reading the blog, one interesting thing about chest Xrays is that changes in the lungs often lag about 3 days behind what is actually happening. So Xrays can be normal with pneumonia if it is early and can be abnormal after it is gone. This is important to understand as we suspect that the pneumonia is getting better even though it is only lately present on Xrays. Knowing that Mom has been fighting pneumonia, the doctors will probably want to be very conservative in deciding when to remove the tracheostomy tube as that allows them to easily suction off the exudate (goo) from her infection. In addition, the secretions will probably get significantly worse for a day or two when Mom is transferred as they are jarred loose by the movement. In the long run, this will be good but it will probably make for a couple stressful days when we get back and so we preemptively ask for your patience when that time comes with regard to visits and calls.
Last night, Mom finally got the MRI of her neck and so she was a bit dopey this morning. There was evidence of ligamentous injury on the study and so Mom will have to continue wearing the collar for a number of weeks. It is disappointing that she has to stay in the collar but very good that they were conservative and ran the MRI. Otherwise she might further injure the area while it is healing.
Now for good news:
Mom is really starting to wake up. Yesterday she was sleepy all morning but finally became alert in the late afternoon. At that time, while Brian was in with her, she started coughing badly. Before Brian could ask if she needed suction, she grabbed the sign Roland made her and pointed to suction. The nurse, Kevin, was there and was able to take care of it immediately. [We love Kevin by the way- he was super with Mom.] She went on to use the sign again two or three more times, so we really felt confident that she could read it and process its purpose.
This afternoon the sign was made redundant. Mom has a lot more focus with her speaking and my eyes are doing better at lipreading so we are over the sign. Poor sign. One brief flash of glory then resigned to the landfill.
Brian had to leave today. It was very sad for all of us. He will be joining us again in Nashville as needed but it felt so very strange. The ride back from the airport was quite peculiar for both Rol and me. It was the first time, since this remarkable journey began, that the three of us were not together. Not that we will ever be apart again. Brian and Mom got some good time together last night and this morning. She understood that he needed to get back to little Hailey.
Tonight's super-spectacular moment came when Roland and I went in to say hello. As is our custom when we arrive, I futz edwith this and that while Roland had his hello (then I usually sneak in for mine). Roland and I had picked up coffee on the way in and Roland took a sip before taking off his jacket. Mom's eyes lit up and she fairly shouted 'Is that coffee?' if it is possible to shout without making noise. Roland looked quite startled and said, 'Yes it is, honey.' So eager, Mom queried, 'Can I have some?' and was quite wroth when we had to deny her. Quite a positive thing for Roland as well to see that Mom is really in there.
Looking forward to sharing more of the journey as time permits. With love, as always,
jacqui
posted by Jacqui at 6:13 PM
0 comments
Wednesday, February 16, 2005
Wow
Hell, I don't know...
Today was a BIG BIG day. Good news. [Some bad news but that's nothing new.]
I think, for now, I will let the pictures do the talking...
with love,
jacqui
Today was a BIG BIG day. Good news. [Some bad news but that's nothing new.]
I think, for now, I will let the pictures do the talking...
with love,
jacqui
posted by Jacqui at 8:49 PM
1 comments
Welcome to Gotham City
The word on the street is they are thinking of ripping this place down.
I admit sometimes I think of it as my own personal hellhole, but it still makes me sad.
Although antiquated in ways, the hospital architecture embodies a boundless optimism and brighter tomorrow from which I borrow strength.
I admit sometimes I think of it as my own personal hellhole, but it still makes me sad.
Although antiquated in ways, the hospital architecture embodies a boundless optimism and brighter tomorrow from which I borrow strength.
posted by Jacqui at 8:40 PM
0 comments
What a charmer
We have a suspicion that Mom is currently seeing double. So this is very similar to what it is probably like for her...
posted by Jacqui at 8:35 PM
0 comments
A great idea
I've got a great idea
And wouldn't you like to know
You probably can't bear it
So I guess I'll have to share it
I thought of it a moment ago
It starts with your hand in mine
And next comes a little stroll
You probably won't buy it
But I'm trying to keep it quiet
So please don't tell a soul
And wouldn't you like to know
You probably can't bear it
So I guess I'll have to share it
I thought of it a moment ago
It starts with your hand in mine
And next comes a little stroll
You probably won't buy it
But I'm trying to keep it quiet
So please don't tell a soul
posted by Jacqui at 8:21 PM
1 comments
'cause if you do
The world and you
Will think I'm crazy and give me medicine
They'll drag me away
And as I go you'll hear me say
I could have been a decent match for edison
Ideas are few and far between
And good ideas are rarer still
So listen and be wise
Just forget the other guys
'cause my idea's no good for three
My idea is you and me
Song lyrics courtesy of Harry Connick Jr.
The world and you
Will think I'm crazy and give me medicine
They'll drag me away
And as I go you'll hear me say
I could have been a decent match for edison
Ideas are few and far between
And good ideas are rarer still
So listen and be wise
Just forget the other guys
'cause my idea's no good for three
My idea is you and me
Song lyrics courtesy of Harry Connick Jr.
posted by Jacqui at 8:20 PM
0 comments
A bit Leery
As promised, here I bring you the skinny on the Lifeflight facilities.
First off, they have their own webpage: Here
Secondly, it turns out that they are commonly considered the #1 lifeflight team in the nation. The plane is a Leer Jet that has been converted into an ambulance. To make more space for medical stuff, the bathroom has been ripped out and the storage space is non-existent. The team consists of the patient, the pilot, the co-pilot and 2-3 dual certified lifeflight nurses. In Mom's case, it will probaly end up being two nurses and me.
The wonderful people at Vanderbilt in Workers Compensation (did I mention this has become a Workers comp issue?) have been so thoughtful. I had my first call with Terri Parker yesterday and she was so very gentle and sweet and concerned about all of us as well as Mom. Anyway, Terri has already been cultivating the crew for Mom's flight. Not that I want anyone to get too excited about the 'when' as it is still completely up in the air. But it is really nice to be learning all the details before we end up in the middle of it!
More on Mom soon!
First off, they have their own webpage: Here
Secondly, it turns out that they are commonly considered the #1 lifeflight team in the nation. The plane is a Leer Jet that has been converted into an ambulance. To make more space for medical stuff, the bathroom has been ripped out and the storage space is non-existent. The team consists of the patient, the pilot, the co-pilot and 2-3 dual certified lifeflight nurses. In Mom's case, it will probaly end up being two nurses and me.
The wonderful people at Vanderbilt in Workers Compensation (did I mention this has become a Workers comp issue?) have been so thoughtful. I had my first call with Terri Parker yesterday and she was so very gentle and sweet and concerned about all of us as well as Mom. Anyway, Terri has already been cultivating the crew for Mom's flight. Not that I want anyone to get too excited about the 'when' as it is still completely up in the air. But it is really nice to be learning all the details before we end up in the middle of it!
More on Mom soon!
posted by Jacqui at 8:19 AM
2 comments
Tuesday, February 15, 2005
Journal
Tonight I do not have the energy to tell you all all about the air evacuation unit. I will do that in the morning. But I did want to share with you my last journal entry. It was written on January 29th- a lifetime ago in so many ways. Yet it seems like perhaps I was guided to write it in preparation for this odyssey...
'Some days, some progress, some pain, some joy, some bravery and some strain.
Some things I can do, some things I can be, and some things just have to be let go.'
That is the entire entry. I had forgotten I wrote it. Today I stumbled on it as I was getting something I had tucked in my journal for safekeeping. [This blog has currently surplanted it for writing.] Somehow it spoke to me of all the things we currently struggle with- our helplessness in the face of her distress and confusion, our pain and bewilderment, our excitement with the little steps she makes on the path back to us.
The first line speaks to me of the difficulty of living a deliberate life. The second to the importance of letting go of ego and limits and leaving faith in God to care for the rest. I hope this brings you comfort as it did for me.
Your friend-
jacqui
'Some days, some progress, some pain, some joy, some bravery and some strain.
Some things I can do, some things I can be, and some things just have to be let go.'
That is the entire entry. I had forgotten I wrote it. Today I stumbled on it as I was getting something I had tucked in my journal for safekeeping. [This blog has currently surplanted it for writing.] Somehow it spoke to me of all the things we currently struggle with- our helplessness in the face of her distress and confusion, our pain and bewilderment, our excitement with the little steps she makes on the path back to us.
The first line speaks to me of the difficulty of living a deliberate life. The second to the importance of letting go of ego and limits and leaving faith in God to care for the rest. I hope this brings you comfort as it did for me.
Your friend-
jacqui
posted by Jacqui at 8:14 PM
0 comments
Sitting and nagging
Things have gotten rather interesting the last 36 hours here. In good ways, to be sure, but it is still somewhat overwhelming.
Let's see...
Mom did not have surgery yet on her ankle. It appears to be something they may want to do in either one or two stages, depending on the day and their moods. It didn't happen yesterday and has been tabled for the time being.
Mentally, Mom appears to come and go a bit. She spends a lot of time drifting in and out of consciousness. At times, she is agitated and seems confused. Other moments, she is very lucid and engaging, beaming that smile or winking. We have gotten slightly better at lip reading, but certainly nowhere near good enough to have a feel for where she currently stands cognition-wise. Hopefully that will continue to improve over the next day or so.
We THINK she can read but aren't sure. So Roland had a wonderful idea of giving her a chart and letting her point to things. He is making it right now for our return and we will see how that goes.
One of Mom's lungs has gotten 'cloudy' but it is too early to know if that is going to be a problem. Her temperature and white count have been better so hopefully this will resolve without incident. Mom is currently having a trial with her trach collar. This is a tube that blows humidified air past her tracheostomy and leaves Mom in charge of the breathing. This would be the next step in getting off the ventilator. We will see. Don't get too excited yet.
Mom has decided she is ready to go and has started sitting up on her own! She is also moving her head a lot more. They are still working on getting the MRI so they can clear her neck. That would be great as it would allow them to take off the C-collar. Hopefully we will get that soon.
Finally, there is some talk of flying Mom back to Vanderbilt in the nearish but undefined future. This could happen without much warning and may be scheduled and rescheduled several times before it truly happens. In addition, the biosecurity people have started to nag about all the stuff in Mom's room. So we are going to ask that, for the moment, people stop sending things. They are very very welcome but we are afraid to lose anything should we need to leave suddenly. Once we have an all-clear on this, I can guarantee I will let you know as your cards, letters and thoughtful gifts have brightened all of our hearts as well as hers.
I will try and make time to tell you all about the equipment for the eventual airlift in my next post. It is really quite fascinating! In the meantime, we welcome your prayers and posts-
jackie chris
Let's see...
Mom did not have surgery yet on her ankle. It appears to be something they may want to do in either one or two stages, depending on the day and their moods. It didn't happen yesterday and has been tabled for the time being.
Mentally, Mom appears to come and go a bit. She spends a lot of time drifting in and out of consciousness. At times, she is agitated and seems confused. Other moments, she is very lucid and engaging, beaming that smile or winking. We have gotten slightly better at lip reading, but certainly nowhere near good enough to have a feel for where she currently stands cognition-wise. Hopefully that will continue to improve over the next day or so.
We THINK she can read but aren't sure. So Roland had a wonderful idea of giving her a chart and letting her point to things. He is making it right now for our return and we will see how that goes.
One of Mom's lungs has gotten 'cloudy' but it is too early to know if that is going to be a problem. Her temperature and white count have been better so hopefully this will resolve without incident. Mom is currently having a trial with her trach collar. This is a tube that blows humidified air past her tracheostomy and leaves Mom in charge of the breathing. This would be the next step in getting off the ventilator. We will see. Don't get too excited yet.
Mom has decided she is ready to go and has started sitting up on her own! She is also moving her head a lot more. They are still working on getting the MRI so they can clear her neck. That would be great as it would allow them to take off the C-collar. Hopefully we will get that soon.
Finally, there is some talk of flying Mom back to Vanderbilt in the nearish but undefined future. This could happen without much warning and may be scheduled and rescheduled several times before it truly happens. In addition, the biosecurity people have started to nag about all the stuff in Mom's room. So we are going to ask that, for the moment, people stop sending things. They are very very welcome but we are afraid to lose anything should we need to leave suddenly. Once we have an all-clear on this, I can guarantee I will let you know as your cards, letters and thoughtful gifts have brightened all of our hearts as well as hers.
I will try and make time to tell you all about the equipment for the eventual airlift in my next post. It is really quite fascinating! In the meantime, we welcome your prayers and posts-
jackie chris
posted by Jacqui at 4:42 PM
1 comments
Not quite sure
Yesterday was an interesting day with lots of space and waiting interspersed with frantic moments. We are headed over to see Mom here soon so I will have to finish this post later but just a mini-update to tide you over.
There were no major surprises in Mom's progress yesterday. She seems to be pretty darn tired from all the everything and spent most of the day sleeping. She woke up again in the evening for a little visit but remained pretty whipped. We are still uncertain whether she had surgery yet- she hadn't as of 10pm but they said it might still happen. We will find out this morning.
I have figured out how to edit these things once posted and so will finish this later.
For now, with love from Team Shellener,
jax
There were no major surprises in Mom's progress yesterday. She seems to be pretty darn tired from all the everything and spent most of the day sleeping. She woke up again in the evening for a little visit but remained pretty whipped. We are still uncertain whether she had surgery yet- she hadn't as of 10pm but they said it might still happen. We will find out this morning.
I have figured out how to edit these things once posted and so will finish this later.
For now, with love from Team Shellener,
jax
posted by Jacqui at 9:41 AM
0 comments
Valentine from Pam
A Valentine's appearance from my Mom for you.
posted by Jacqui at 8:28 AM
0 comments
Monday, February 14, 2005
Pam Schneller Medical Fund
Hello everyone,
This is Kelly, part of Team Shellener with an important announcement about how we can all help Pam and her family. Given the severity of Pam's injuries, we can anticipate that the medical care and other related expenses for her full recovery will be substantial. To make it easy for friends to help, Vanderbilt Community Chorus member Debora Shiflett has made the arrangements to set up a fund for the Schnellers through Bank of America. If you would like to donate, write a check to the Pam Schneller Medical Fund and mail to: Bank of America, Pam Schneller Medical Fund, 2121 Blakemore Ave, Nashville, TN 37212. You can also donate by going to any Bank of America location nationwide. If you have any questions about the fund or about donating, please call Bank of America at (615) 291-2891. Thank you your support in this tangeable way and for all for your cards, balloons, gifts and letters. Today Pam received dozens of cards, gifts and packages which necessited a mail trolley to deliver the items to the 9th floor! It was grand and raised everyone's spirits! Pictures to follow.
With love,
Kelly
This is Kelly, part of Team Shellener with an important announcement about how we can all help Pam and her family. Given the severity of Pam's injuries, we can anticipate that the medical care and other related expenses for her full recovery will be substantial. To make it easy for friends to help, Vanderbilt Community Chorus member Debora Shiflett has made the arrangements to set up a fund for the Schnellers through Bank of America. If you would like to donate, write a check to the Pam Schneller Medical Fund and mail to: Bank of America, Pam Schneller Medical Fund, 2121 Blakemore Ave, Nashville, TN 37212. You can also donate by going to any Bank of America location nationwide. If you have any questions about the fund or about donating, please call Bank of America at (615) 291-2891. Thank you your support in this tangeable way and for all for your cards, balloons, gifts and letters. Today Pam received dozens of cards, gifts and packages which necessited a mail trolley to deliver the items to the 9th floor! It was grand and raised everyone's spirits! Pictures to follow.
With love,
Kelly
posted by Jacqui at 8:14 PM
2 comments
Sweetheart
In honor of Valentine's day (and to take our minds off of the potential surgery today), I would like to ask you all to post your favorite stories of Mom. Little snippets, zingers and anecdotes. It will help us all to remember why we mustn't tire or lose hope. As Roland said last night when a dear friend commented on our steadfast resolve to pull through this together, "Well, geez, Pam is just so extraordinary. What else are we to do?"
So please, your stories to help us pass the hours-
j
So please, your stories to help us pass the hours-
j
posted by Jacqui at 8:08 AM
4 comments
Chatterbox
As you can see by my previous post, Mom is definitely feeling better now that she has had the tracheostomy. She remained pretty tired all day, just floating in to visit then drifting off again. But she has gotten very good at saying what she wants- even though most of the time we can't understand her. She is so agitated to share things with us that she talks too fast for us to lip read. I asked her to slow down several times, but she isn't so compliant with that. Then I reminded her to E-NUN-SEE-ATE and she grinned rather wryly. Not that it made a difference...
Water is Mom's new favorite thing. Well, okay, water has always been big for Mom (recall the sodium depletion incident when she had pneumonia). But she has been asking for it and seems very thirsty. I have explained she can't have water until they perform an imaging studyu to mmake sure she is swallowing normally, but she seems to forget that occasionally. We have been able to swab her mouth with a wet sponge on a stick, which I will refer to as a hospital lolly from now on, that she tries to chew. Last night she said she wanted water and I said I would get her a little on her lolly. Mom shook her head no and said she wanted A LOT of water. I reminded her that was a 'no go' for now and she made quite a face at me. Brat!
Getting to see Mom's glorious smile and get kissed back were yesterday's special gifts. Medically there was little change otherwise. They are going to try and repair Mom's ankle soon- today actually- but that is catch as catch can. She is on deck for ankle reconstruction this morning but chances are 50-50 they will postpone till Thursday for a more critical case. This makes today a waiting game so we will see what we have to report as we go.
Yesterday's nurse, Christine, was a total superstar. She was engaging and on top of Mom's case. She volunteered information that she had received and was very supportive of us. It turns out Christine had helped take care of Mom on the 3rd when she came it. She was VERY impressed with Mom's progress and actually said Mom's response was a miracle, due in no small part to all your prayers.
Well, it is time to call the hospital again soon so I must wrap this up-
-j
Water is Mom's new favorite thing. Well, okay, water has always been big for Mom (recall the sodium depletion incident when she had pneumonia). But she has been asking for it and seems very thirsty. I have explained she can't have water until they perform an imaging studyu to mmake sure she is swallowing normally, but she seems to forget that occasionally. We have been able to swab her mouth with a wet sponge on a stick, which I will refer to as a hospital lolly from now on, that she tries to chew. Last night she said she wanted water and I said I would get her a little on her lolly. Mom shook her head no and said she wanted A LOT of water. I reminded her that was a 'no go' for now and she made quite a face at me. Brat!
Getting to see Mom's glorious smile and get kissed back were yesterday's special gifts. Medically there was little change otherwise. They are going to try and repair Mom's ankle soon- today actually- but that is catch as catch can. She is on deck for ankle reconstruction this morning but chances are 50-50 they will postpone till Thursday for a more critical case. This makes today a waiting game so we will see what we have to report as we go.
Yesterday's nurse, Christine, was a total superstar. She was engaging and on top of Mom's case. She volunteered information that she had received and was very supportive of us. It turns out Christine had helped take care of Mom on the 3rd when she came it. She was VERY impressed with Mom's progress and actually said Mom's response was a miracle, due in no small part to all your prayers.
Well, it is time to call the hospital again soon so I must wrap this up-
-j
posted by Jacqui at 7:47 AM
0 comments
Sunday, February 13, 2005
Freedom!
Mom did indeed have her tracheostomy last night. Today she is finally free from the tube and the tape. She is very very sleepy and drifts in and out. We are headed back to see her but I include two pictures of her saying hello to you all.
-j
-j
posted by Jacqui at 4:41 PM
1 comments
Smiles
Now that is a beautiful smile! So wonderful to finally get to see it again.
posted by Jacqui at 4:39 PM
3 comments
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A blog of Jacqui's continuing adventures.
