By any measure our outing this afternoon was a success. Christy showed up with one of Jillian's jazzy pairs of shoes, so Jilly, Raymond, and I walked to the movie theater. We saw the new Woody Allen movie, Vicky Christina Barcelona. We all enjoyed it and agreed it's quite a departure from earlier Woody Allen films.
Then we went to the Borders next door to use the internet. Jilly was able to check her email for the first time in five weeks. Some issues involving school were worrying her, and she was able to handle them without difficulty. I was afraid that other accumulated messages would overwhelm her, but she managed to sort them out pretty well. Anyone who has emailed her will, I'm sure, understand that she didn't answer messages today. She won't have consistent access until we get back to New Mexico.
We had decided to be flexible on the question of whether to have dinner before returning to the hospital. Although we offered to catch a cab back to the hospital, Jilly preferred to walk. She's very weak, but felt that walking did her good. She was tired and emotional by the time we got back to the hospital, but I think she made a good call in choosing the exercise. For dinner she reached for another serving from Ariel's bottomless container of spaghetti. She also managed to down another of those supersweet Ensures by adding a scoop of strawberry ice cream to it.
I've been really amazed at how Jilly has displayed no anger at what has happened to her. Every day of progress reduces my own anger quotient, but I really expected a fresh wave of it from Jillian as she came to understand the facts. As with other aspects of her situation, it may be that she just hasn't sorted it out yet--which may be a blessing.
Let's see what the next week--likely her last in the hospital--will bring.
Ingrid
Sunday, September 14, 2008
Saturday, September 13, 2008
In the past few days we have realized that Jilly's specific memory of her weeks in the hospital extends back only to a week ago yesterday when Jeremy and Katie arrived. I think she recalls some conversations she had in the days just before that, but the whole picture definitely isn't there.
What's surprising about this is the fact that she was apparently so lucid for at least a week before her memory kicked in. She talked about all her plans for the fall, and described in detail the concept of her dissertation. Many visitors proclaimed that she was totally herself again. Which maybe she was, only without the short-term memory.
I suppose we could be once again deluded, but Jillian now seems in full possession of herself. She still wants to get out of the hospital, but she isn't trying to recruit conspirators in her breakout plans any more. As her good friends echo my own concerns about how she needs to rest and build up her strength, she is entertaining the notion of staying in New Mexico for more than a minute or two.
Of course we were not surprised to hear that Jilly has no memory of the accident or her time in intensive care. What did surprise us was how far that extended (a week and five days) into her time on the 6th floor. Those were difficult days: Her attention span in therapy sessions was short; she seemed able to sleep for no more than fifteen minutes at a time; with the trach still in she required nebulizer treatments throughout the day; and she was soooo thirsty. I think her mind protected her from these discomforts and cleared the way for real consciousness only after the trach size was reduced and she passed the swallow test. This meant she could speak, drink, and eat. I'm very glad she doesn't remember those battles with the blue hose or the refusals of people she loves to give her water.
This afternoon we have permission to take her out to the movies. I think the short walk will do her good, but if it wears her out we'll take a cab, adapting our plans as we proceed.
All our best to all you who continue to follow this story.
Ingrid
What's surprising about this is the fact that she was apparently so lucid for at least a week before her memory kicked in. She talked about all her plans for the fall, and described in detail the concept of her dissertation. Many visitors proclaimed that she was totally herself again. Which maybe she was, only without the short-term memory.
I suppose we could be once again deluded, but Jillian now seems in full possession of herself. She still wants to get out of the hospital, but she isn't trying to recruit conspirators in her breakout plans any more. As her good friends echo my own concerns about how she needs to rest and build up her strength, she is entertaining the notion of staying in New Mexico for more than a minute or two.
Of course we were not surprised to hear that Jilly has no memory of the accident or her time in intensive care. What did surprise us was how far that extended (a week and five days) into her time on the 6th floor. Those were difficult days: Her attention span in therapy sessions was short; she seemed able to sleep for no more than fifteen minutes at a time; with the trach still in she required nebulizer treatments throughout the day; and she was soooo thirsty. I think her mind protected her from these discomforts and cleared the way for real consciousness only after the trach size was reduced and she passed the swallow test. This meant she could speak, drink, and eat. I'm very glad she doesn't remember those battles with the blue hose or the refusals of people she loves to give her water.
This afternoon we have permission to take her out to the movies. I think the short walk will do her good, but if it wears her out we'll take a cab, adapting our plans as we proceed.
All our best to all you who continue to follow this story.
Ingrid
Saturday, September 13, 2008
Home Town News
Jilly was on the front page of yesterday's Albuquerque Journal! Here's a link:
√http://www.abqjournal.com/upfront/121036424158upfront09-12-08.htm
You have to click on the Trial icon and let a commercial run in order to view the story.
The video link shows her performing (front & center) in a piece by choreographer Jennifer Allen, sometime in 2007 I think.
Ingrid
√http://www.abqjournal.com/upfront/121036424158upfront09-12-08.htm
You have to click on the Trial icon and let a commercial run in order to view the story.
The video link shows her performing (front & center) in a piece by choreographer Jennifer Allen, sometime in 2007 I think.
Ingrid
Friday, September 12, 2008
Friday, September 12
Have I told you about Miss A? Miss A is the head nurse on the TBI section of the rehab floor at Bellevue. I am not ashamed to admit that she scares me. Over the past five weeks (almost) I have observed how hard the nursing staff works. They are smart and dedicated, and I try really hard not to be in trouble with any of them.
Today, however, Miss A busted us on two counts. First, Jilly was avoiding her afternoon occupational therapy group session on the grounds that she needed to finish her lunch and take a nap. Apparently this is not acceptable. In addition, when she came into Jilly's room to enforce the therapy attendance policy, Miss A noticed that we have filled the window sill with books, clothing, and other miscellany. Apparently this too is unacceptable. So.... Like it or not, Jilly headed to the therapy, and I proceeded to sort and organize all that stuff. Luckily for us, Miss A seems to have chosen to ignore the fact that Jilly was not in regulation pjs.
The reason Jilly needed a nap was that this morning in the occupational therapy session that she does enjoy, she and therapist Rivky actually LEFT THE BUILDING! The mission: Walk to the local Gristede's, navigate the aisles, and collect the items on a list. Rivky pronounced the trip a success; Jilly said it was great to be outside, but she would have preferred to hunt down her own kind of food.
Today we welcomed a surprise visitor: Brother Jeremy's high school debate partner, Ted Chang. Ted, who has been living in New York for several years, was married just a few months ago. It was great to see him after all these years and to meet his wife Tricia. Ariane Reinhart also visited, bringing tidings from the American Dance Festival, one of Jilly's best-loved habitats over the last several summers. Many of the other familiar friends also braved rainy weather to show up for Jilly again.
Based on a conversation today with Dr. Kalva (attending physician on the floor), it's looking as if we should be able to bring Jilly back to New Mexico just within the six weeks that her neurologist said they would require post surgery. This will depend on a last visit from the neuro team, who may require a precautionary CAT scan, and progress that continues over the next several days as it has up till now.
So we feel we can see the light--and the serious green chile--at the end of this tunnel, which could have been much longer that it now seems it will be. The kind thoughts of all who have been reading and posting on this blog continue to lift our spirits and Jilly's prospects.
Thank you all.
Ingrid
Today, however, Miss A busted us on two counts. First, Jilly was avoiding her afternoon occupational therapy group session on the grounds that she needed to finish her lunch and take a nap. Apparently this is not acceptable. In addition, when she came into Jilly's room to enforce the therapy attendance policy, Miss A noticed that we have filled the window sill with books, clothing, and other miscellany. Apparently this too is unacceptable. So.... Like it or not, Jilly headed to the therapy, and I proceeded to sort and organize all that stuff. Luckily for us, Miss A seems to have chosen to ignore the fact that Jilly was not in regulation pjs.
The reason Jilly needed a nap was that this morning in the occupational therapy session that she does enjoy, she and therapist Rivky actually LEFT THE BUILDING! The mission: Walk to the local Gristede's, navigate the aisles, and collect the items on a list. Rivky pronounced the trip a success; Jilly said it was great to be outside, but she would have preferred to hunt down her own kind of food.
Today we welcomed a surprise visitor: Brother Jeremy's high school debate partner, Ted Chang. Ted, who has been living in New York for several years, was married just a few months ago. It was great to see him after all these years and to meet his wife Tricia. Ariane Reinhart also visited, bringing tidings from the American Dance Festival, one of Jilly's best-loved habitats over the last several summers. Many of the other familiar friends also braved rainy weather to show up for Jilly again.
Based on a conversation today with Dr. Kalva (attending physician on the floor), it's looking as if we should be able to bring Jilly back to New Mexico just within the six weeks that her neurologist said they would require post surgery. This will depend on a last visit from the neuro team, who may require a precautionary CAT scan, and progress that continues over the next several days as it has up till now.
So we feel we can see the light--and the serious green chile--at the end of this tunnel, which could have been much longer that it now seems it will be. The kind thoughts of all who have been reading and posting on this blog continue to lift our spirits and Jilly's prospects.
Thank you all.
Ingrid
Thursday, September 11, 2008
Thursday, September 11
Although we did not have the opportunity to participate in any of the observations of the anniversary of 9/11/01, we are moved by the experience of being here in New York on such a solemn day. What a wonder this city is! Every day we find occasion to ponder how well it works and how civilized it is.
As we learned in the late '60s, living here is challenging, as the past month of being here has been. But even in as short a time as this last four weeks, it has come to feel like a couple of small communities for us.
Of course the most important of these is Bellevue, itself as big and diverse as some cities we've lived in. On a trip to the nearby Border's last weekend, we saw Jilly's art therapist. In the hospital cafe, in that long hallway we traipse half-a-dozen times a day, or in the lobby where we manage the visitor traffic every afternoon, we are likely to encounter nurses, doctors, and therapists who want to know how Jillian is doing. Last night we ran into Carmen, sister of an ICU patient in those first few weeks, who went to bat for me when hospital security rousted the Jilly posse from the 10th floor waiting room. At the bus stop this morning, I met Jilly's speech therapist; by the time we got to the hospital she knew what I hoped to learn after the doctors' weekly patient evaluations this morning, so that by midmorning we had an update. (All progress, all good.)
Jilly had another good day. She actually completed all her morning therapy sessions. I confess I let her snooze through the afternoon group occupational therapy, though. At that moment, nothing seemed as important as some extra rest. A full recovery seems more likely every day; the task at hand is to ensure that her sense of urgency does not undermine that wonderful eventuality, which seemed so remote a few weeks ago.
Ingrid
As we learned in the late '60s, living here is challenging, as the past month of being here has been. But even in as short a time as this last four weeks, it has come to feel like a couple of small communities for us.
Of course the most important of these is Bellevue, itself as big and diverse as some cities we've lived in. On a trip to the nearby Border's last weekend, we saw Jilly's art therapist. In the hospital cafe, in that long hallway we traipse half-a-dozen times a day, or in the lobby where we manage the visitor traffic every afternoon, we are likely to encounter nurses, doctors, and therapists who want to know how Jillian is doing. Last night we ran into Carmen, sister of an ICU patient in those first few weeks, who went to bat for me when hospital security rousted the Jilly posse from the 10th floor waiting room. At the bus stop this morning, I met Jilly's speech therapist; by the time we got to the hospital she knew what I hoped to learn after the doctors' weekly patient evaluations this morning, so that by midmorning we had an update. (All progress, all good.)
Jilly had another good day. She actually completed all her morning therapy sessions. I confess I let her snooze through the afternoon group occupational therapy, though. At that moment, nothing seemed as important as some extra rest. A full recovery seems more likely every day; the task at hand is to ensure that her sense of urgency does not undermine that wonderful eventuality, which seemed so remote a few weeks ago.
Ingrid
Wednesday, September 10, 2008
Wednesday, September 10
It seems that every day brings good news. Here is today's:
I don't know if all those supporters who haven't had the opportunity to visit Jillian knew that her injury extended to her left eye. As I understand it, the intracranial bleeding caused by the accident also flowed into the area behind or above the eye, resulting in substantial pressure on the optic nerve. Alleviating this required not another major surgery, but a slit cut just below the eye to evacuate the accumulated blood. Throughout her time in ICU, that eye was swollen shut and scary-looking.
Two weeks ago, just after Jilly was moved to the Rehab floor, she was examined by the Ophthalmology Department. At that time, she was not conscious enough to cooperate with the doctors, and they believed that there would be some loss of vision.
Today, fully conscious and all to ready to skip therapy, Jillian headed to the fifth floor again. After a bit of a wait and a full exam, with a bit of drama caused by a burly, delusional prisoner held in check by three burly Corrections Department officers, the opthalmologists described Jilly's vision as practically perfect: 20/40. The only treatment still required: Artificial Tears to counteract dryness. How about them apples!
Jillian's appetite is improving daily. Today she actually ate substantial amounts of three meals. She will not touch that Ensure they keep delivering to her. I think it took her almost a week to rehydrate herself; she has finally slowed down on that vitamin water. Despite all those notes when she was (I now realize) not yet fully conscious, she seems to have lost her taste for coffee and has not tried to persuade anybody to bring us all a beer.
We are finding enforcement of the visitation policy on the 6th floor a little unpredictable, even when we try to follow it rigorously. In light of a few minor disturbances today, we have decided to ask the loyal locals to schedule their visits, and plan for every other day instead of every day. Anyone who hasn't received an email from Ariel or a call from one of us but who wants to visit between now and Saturday, please give me a call at 505-507-8386. I want to avoid making people wait as much as possible, or, worse, find they can't get in at all. We want to respect the floor's two-at-a-time rule and still have Jilly see all those friends, whose conversation and companionship lifts her up. In truth, I've found the rule works in her best interests as well as the rehab staff's. We're just trying to find the perfect mix.
Jillian's remarkable recovery thus far has been an enormous, gratifying team effort. To all those who have followed it, whether we know you or not, whether you've ever met Jilly or not, we owe a great debt of gratitude. We will find ways to pay it forward.
Ingrid
I don't know if all those supporters who haven't had the opportunity to visit Jillian knew that her injury extended to her left eye. As I understand it, the intracranial bleeding caused by the accident also flowed into the area behind or above the eye, resulting in substantial pressure on the optic nerve. Alleviating this required not another major surgery, but a slit cut just below the eye to evacuate the accumulated blood. Throughout her time in ICU, that eye was swollen shut and scary-looking.
Two weeks ago, just after Jilly was moved to the Rehab floor, she was examined by the Ophthalmology Department. At that time, she was not conscious enough to cooperate with the doctors, and they believed that there would be some loss of vision.
Today, fully conscious and all to ready to skip therapy, Jillian headed to the fifth floor again. After a bit of a wait and a full exam, with a bit of drama caused by a burly, delusional prisoner held in check by three burly Corrections Department officers, the opthalmologists described Jilly's vision as practically perfect: 20/40. The only treatment still required: Artificial Tears to counteract dryness. How about them apples!
Jillian's appetite is improving daily. Today she actually ate substantial amounts of three meals. She will not touch that Ensure they keep delivering to her. I think it took her almost a week to rehydrate herself; she has finally slowed down on that vitamin water. Despite all those notes when she was (I now realize) not yet fully conscious, she seems to have lost her taste for coffee and has not tried to persuade anybody to bring us all a beer.
We are finding enforcement of the visitation policy on the 6th floor a little unpredictable, even when we try to follow it rigorously. In light of a few minor disturbances today, we have decided to ask the loyal locals to schedule their visits, and plan for every other day instead of every day. Anyone who hasn't received an email from Ariel or a call from one of us but who wants to visit between now and Saturday, please give me a call at 505-507-8386. I want to avoid making people wait as much as possible, or, worse, find they can't get in at all. We want to respect the floor's two-at-a-time rule and still have Jilly see all those friends, whose conversation and companionship lifts her up. In truth, I've found the rule works in her best interests as well as the rehab staff's. We're just trying to find the perfect mix.
Jillian's remarkable recovery thus far has been an enormous, gratifying team effort. To all those who have followed it, whether we know you or not, whether you've ever met Jilly or not, we owe a great debt of gratitude. We will find ways to pay it forward.
Ingrid
Tuesday, September 9, 2008
Tuesday, September 9, 2008
Warning to all visitors: Jilly is desperate to bust out of the hospital. If she can find a way to jump into your pocket or sneak out behind you, she may try it. An alarm will sound. Locks will click on the perimeter doors. Not sure she knows this yet, but she is in a Catch-22 situation: She doesn't understand why she needs to be there, and that's why she needs to be there.
Another thing she doesn't understand is any potential benefits of her physical therapy sessions. She stuck through only about fifteen minutes of of today's scheduled activities, objecting to them on the grounds that she was too tired and that the treadmill isn't going to make her fit for dance.
Just talking about what she had planned for the fall makes me tired, but she believes she is ready for all of it. It's hard for me to realize that the trach downsizing, and subsequently her first audible words, happened just a week ago tomorrow, because she's made such great strides. I just hope we are able to set a reasonable pace and motivate her to follow through with the often-difficult steps she needs to take while she is at Bellevue.
Balancing the exhilaration of visiting hours with the demanding routine of therapy is quite a challenge. Yesterday brought two great friends from Albuquerque days. Rani Waterman from Jillian's Academy class, and Ana Archuleta, who danced with Jilly at Alwin's and in the Performers Ballet & Jazz Company from elementary through high school. Ariel was there at the same time, as were a few other people, so we broke a few rules to have everybody hang out in the day room for awhile. A second wave, this time of NY friends, followed. Jilly thoroughly enjoyed all these welcome visitors, but I'm afraid I let it go on a bit too late, especially since they were followed by a visit from the choreographer with whom she was working before the accident. I fear this may have contributed to today's fatigue. Happily, a more moderate procession appeared today; let's hope the result is a more cooperative session with the physical therapist. The stimulation of friendship and the discipline of all the therapies are both critical to Jillian's recovery, so I hope we are achieving a good mix.
Ingrid
Another thing she doesn't understand is any potential benefits of her physical therapy sessions. She stuck through only about fifteen minutes of of today's scheduled activities, objecting to them on the grounds that she was too tired and that the treadmill isn't going to make her fit for dance.
Just talking about what she had planned for the fall makes me tired, but she believes she is ready for all of it. It's hard for me to realize that the trach downsizing, and subsequently her first audible words, happened just a week ago tomorrow, because she's made such great strides. I just hope we are able to set a reasonable pace and motivate her to follow through with the often-difficult steps she needs to take while she is at Bellevue.
Balancing the exhilaration of visiting hours with the demanding routine of therapy is quite a challenge. Yesterday brought two great friends from Albuquerque days. Rani Waterman from Jillian's Academy class, and Ana Archuleta, who danced with Jilly at Alwin's and in the Performers Ballet & Jazz Company from elementary through high school. Ariel was there at the same time, as were a few other people, so we broke a few rules to have everybody hang out in the day room for awhile. A second wave, this time of NY friends, followed. Jilly thoroughly enjoyed all these welcome visitors, but I'm afraid I let it go on a bit too late, especially since they were followed by a visit from the choreographer with whom she was working before the accident. I fear this may have contributed to today's fatigue. Happily, a more moderate procession appeared today; let's hope the result is a more cooperative session with the physical therapist. The stimulation of friendship and the discipline of all the therapies are both critical to Jillian's recovery, so I hope we are achieving a good mix.
Ingrid
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