Let's face it: Life in northwest Albuquerque is much less eventful than life in Bellevue! Before I give a current status report, I have a few tales from the day of Jillian's discharge.
Once Dr. Kalva and the nurses had completed all the paperwork and instructed Jilly on how to care for the PEG wound, we headed up to the 10th floor so Jilly could see where she had spent her first two "lost" weeks. The room she occupied of course had a new occupant, who was conscious and out of the bed, with a family member keeping her company. The nurses and aides surrounded Jilly immediately, their faces bright with smiles over her obvious recovery. It was as if a rock star had come home to visit. This was an epiphany for Jillian, who of course remembers nothing of those dramatic days.
In the hospital lobby, the exit lane was manned by the security guard who, as many friends will remember, rousted our posse from the waiting room sometime in Week 2. Seeing him again, I was happy to remember I had been only slightly rude to him on that day. A week or so later, as Raymond walked through the lobby, the guard had stopped him to ask how Jilly was, also saying that he had been in the ER when Jilly arrived on August 11. We reintroduced ourselves as he looked in amazement at Jillian. He told us how the sight of her had made his heart sink; it was clear he had thought she wouldn't survive or at least would not make such a fast, dramatic recovery.
Because the UN was in session, getting to and from our home base in those last days presented challenges. The traffic was heavy, of course, but worse than that, the streets leading to our sublet were closed off completely! Fortunately, Dr. Kalva provided us with a note explaining that Jilly could not negotiate the steep hill so soon after her release. Skeptical cab drivers waited while we presented the note to the policemen on duty, and we had no difficulty throughout our remaining hours in New York.
Jilly is starting to get used to being somewhat of a miracle. From the 10th-floor nurses to the relatives she's seen since our return, everyone exclaims over how wonderful she looks. She usually replies, "I'm going to look a whole lot better in a few more weeks!"
More catching up tomorrow--and it's all good!
Ingrid
Monday, September 29, 2008
Monday, September 22, 2008
"The Luckiest Girl in the World"
That's what Jillian calls herself these days. The more she learns about what has happened to her, the more fervently she believes that's what she is. She seems to bear no malice toward the driver who hit her, and is filled with gratitude toward those who helped her along the way, from the witnesses at the scene to every friend who sat with her or visited her in the past six weeks to the therapists who've been nagging and encouraging her every day and the 6-South staff who--omigosh, I can't even begin to tell you all they do.
The day started off with a visit from the ENT doctors who had installed her trach, who had promised to come and find out why her voice was disappearing from time to time. Jilly had decided she would not let them do the procedure, which involved inserting a probe through her nose to see what was going on. The doctors, however, insisted it was important, so she relented--a decision she tried to rescind midway through the process. The probe showed that there was a space between her vocal chords, which the docs said would heal itself or be easily taken care of later. They also expressed wonder at Jilly's condition today, describing it in comparison to the day when they installed the trach, a mere five weeks ago today, as nothing short of miraculous.
A few hours later, after confirming that Saturday's abdominal CAT scan had found no problems, Dr. Kalva approved our request to check Jillian out of Bellevue tomorrow. We will fly off to Albuquerque on Wednesday morning.
On her recent forays outside the boundaries of Bellevue, Jillian has found herself easily tired and the world slightly unfamiliar. She recovers quickly on both fronts, but understands she is not yet her old self. She is eager to take the reins of her physical healing into her own hands, and to return to her preferred diet of natural foods and remedies.
We'll continue to keep you all posted.
All our best and gratitude,
Ingrid & Ray
The day started off with a visit from the ENT doctors who had installed her trach, who had promised to come and find out why her voice was disappearing from time to time. Jilly had decided she would not let them do the procedure, which involved inserting a probe through her nose to see what was going on. The doctors, however, insisted it was important, so she relented--a decision she tried to rescind midway through the process. The probe showed that there was a space between her vocal chords, which the docs said would heal itself or be easily taken care of later. They also expressed wonder at Jilly's condition today, describing it in comparison to the day when they installed the trach, a mere five weeks ago today, as nothing short of miraculous.
A few hours later, after confirming that Saturday's abdominal CAT scan had found no problems, Dr. Kalva approved our request to check Jillian out of Bellevue tomorrow. We will fly off to Albuquerque on Wednesday morning.
On her recent forays outside the boundaries of Bellevue, Jillian has found herself easily tired and the world slightly unfamiliar. She recovers quickly on both fronts, but understands she is not yet her old self. She is eager to take the reins of her physical healing into her own hands, and to return to her preferred diet of natural foods and remedies.
We'll continue to keep you all posted.
All our best and gratitude,
Ingrid & Ray
Sunday, September 21, 2008
Sunday morning, September 22
In the past few days, Jillian has experienced some symptoms that the doctors have addressed and so far found inconsequential.
On Friday morning, her voice would disappear at random moments. This seemed to disappear during the day, so we felt confident in taking her out to the opening of a show of interesting, dramatic photographs by her friend and Goldsmiths classmate, Lia Chavez, on Friday evening. Many of the friends who've surrounded Jilly since the accident also came, and we had a tentative plan to go for dinner afterwards. As we were leaving, however, the voice disappeared, this time for a longer period, and Jilly seemed really tired as well. She and her wise friends agreed it might be better to get back to the hospital. Instead of settling into the big lobby there, we all sat in the chic Bellevue Cafe--where the grilled cheese and french fries are to die for. Jilly enjoyed conversation in this relatively peaceful place among people from different parts of her life.
Saturday, the voice was fading in and out again, but worse than that was the pain she was experiencing in and around the now-vacated PEG site. Although there was no sign of infectionor any other problem, the resident on call decided to consult the specialists in both areas. One of the ENT docs who originally installed the trach came in rather late in the evening. The possible sources of the voice problem are not alarming, so she and Jilly agreed to wait until to have them assessed until Monday morning, when a small probe will be used to explore the area.
Troubleshooting the abdominal pain was more problematic. The docs decided to order a CAT scan of the area, which was not done until quite late in the afternoon and unfortunately involved more pain and discomfort. The Transport staff member who took Jilly to the radiology area and brought her back told her about his life and treatment at Bellevue (he was born there and has been hit by a car four times), distracted her in the process. We haven't heard the results of the scan yet.
Within a few days, we'll be checking Jilly out of the hospital and heading for New Mexico. Just four weeks ago, the odds of this day coming did not look good, but here we are. In so many ways, she is her old self again; what remains is a process of sorting out the mind and strengthening the body. It's a bit unpredictable, too, but all the signs are promising.
Have a great Sunday.
Ingrid
On Friday morning, her voice would disappear at random moments. This seemed to disappear during the day, so we felt confident in taking her out to the opening of a show of interesting, dramatic photographs by her friend and Goldsmiths classmate, Lia Chavez, on Friday evening. Many of the friends who've surrounded Jilly since the accident also came, and we had a tentative plan to go for dinner afterwards. As we were leaving, however, the voice disappeared, this time for a longer period, and Jilly seemed really tired as well. She and her wise friends agreed it might be better to get back to the hospital. Instead of settling into the big lobby there, we all sat in the chic Bellevue Cafe--where the grilled cheese and french fries are to die for. Jilly enjoyed conversation in this relatively peaceful place among people from different parts of her life.
Saturday, the voice was fading in and out again, but worse than that was the pain she was experiencing in and around the now-vacated PEG site. Although there was no sign of infectionor any other problem, the resident on call decided to consult the specialists in both areas. One of the ENT docs who originally installed the trach came in rather late in the evening. The possible sources of the voice problem are not alarming, so she and Jilly agreed to wait until to have them assessed until Monday morning, when a small probe will be used to explore the area.
Troubleshooting the abdominal pain was more problematic. The docs decided to order a CAT scan of the area, which was not done until quite late in the afternoon and unfortunately involved more pain and discomfort. The Transport staff member who took Jilly to the radiology area and brought her back told her about his life and treatment at Bellevue (he was born there and has been hit by a car four times), distracted her in the process. We haven't heard the results of the scan yet.
Within a few days, we'll be checking Jilly out of the hospital and heading for New Mexico. Just four weeks ago, the odds of this day coming did not look good, but here we are. In so many ways, she is her old self again; what remains is a process of sorting out the mind and strengthening the body. It's a bit unpredictable, too, but all the signs are promising.
Have a great Sunday.
Ingrid
Friday, September 19, 2008
9/19-9/21
9/19-9/21
Jillian will be attending an opening at Affirmation Arts http://www.affirmationarts.com/ tonight. She wants everyone who was scheduled to visit from 5:30 on to please visit with her at the show instead of at the hospital.
http://www.affirmationarts.com/
523 West 37th Street.
Saturday 9/20
2:00 Sara M + Lauryn
3:00 Rebecca
4:00 Yve
5:00 Yve
6:00 Amber
7:00
7:30 Ingrid + Raymond
Sunday 9/21
11:00
12:00 Amber
1:00
2:00
3:00 OUT
4:00 OUT
5:00 OUT
6:00 OUT
7:00 OUT
7:30 Ingrid + Raymond
Jillian will be attending an opening at Affirmation Arts http://www.affirmationarts.com/ tonight. She wants everyone who was scheduled to visit from 5:30 on to please visit with her at the show instead of at the hospital.
http://www.affirmationarts.com/
523 West 37th Street.
Saturday 9/20
2:00 Sara M + Lauryn
3:00 Rebecca
4:00 Yve
5:00 Yve
6:00 Amber
7:00
7:30 Ingrid + Raymond
Sunday 9/21
11:00
12:00 Amber
1:00
2:00
3:00 OUT
4:00 OUT
5:00 OUT
6:00 OUT
7:00 OUT
7:30 Ingrid + Raymond
Friday, September 19
The PEG is indeed gone! After a few hours of waiting to be summoned, Raymond and I followed as hospital Transport took Jilly first to ultrasound, then to "Intervention" (not the TV show), where the doctors who actually inserted the PEG lurk. I watch Gray's Anatomy and even Hopkins 24-7, but I've never seen anything like this area.
Based on the level of pain Jilly was experiencing, I was convinced there was something wrong with the apparatus itself or with some aspect of how it had been installed--perhaps, as Dr. Kalva had suggested, with one of the stitches. Anything could make it hurt: changing the dressing, too much tape, too little tape, pulling the pajama top over it, even pointing toward it. I guess because the pain was the only symptom, the doctors were limited in what kind of painkiller they wanted to give her, so for the entire three hours she spent in that strange space Jilly was in excruciating pain.
After checking everything they could check and trying every solution they could think of, the doctors finally just threw up their hands and removed the device. One of them told us he'd never known any patient to be so sensitive to a PEG. The pain receded immediately. The bleeding that predictably followed was modest, at least as of last night, and Jillian was again ready to tackle one of those cans of Ensure augmented by a scoop of ice cream, plus some of the supper that showed up on a tray.
Unfortunately, the doctor preferred, after all this, that Jilly not leave the hospital for the evening as we had hoped. Ariane and Charles Reinhart had graciously arranged tickets for the three of us to see the Fall for Dance performance at City Center. Jilly was eager for Raymond and me to see Shen Wei Arts, a company she has admired and talked to us about for almost seven years. We arrived at City Center with moments to spare, and settled in for a wonderful evening. Thank you, Ariane & Charles!
Although the PEG incident cost Jilly a day of therapy sessions, all the other signs are good. The CAT scan showed that Dr. Kalva was right about the bump on the head, which is already smaller. So today we resume pursuit of our exit strategy.
Our best to all of you,
Ingrid
Based on the level of pain Jilly was experiencing, I was convinced there was something wrong with the apparatus itself or with some aspect of how it had been installed--perhaps, as Dr. Kalva had suggested, with one of the stitches. Anything could make it hurt: changing the dressing, too much tape, too little tape, pulling the pajama top over it, even pointing toward it. I guess because the pain was the only symptom, the doctors were limited in what kind of painkiller they wanted to give her, so for the entire three hours she spent in that strange space Jilly was in excruciating pain.
After checking everything they could check and trying every solution they could think of, the doctors finally just threw up their hands and removed the device. One of them told us he'd never known any patient to be so sensitive to a PEG. The pain receded immediately. The bleeding that predictably followed was modest, at least as of last night, and Jillian was again ready to tackle one of those cans of Ensure augmented by a scoop of ice cream, plus some of the supper that showed up on a tray.
Unfortunately, the doctor preferred, after all this, that Jilly not leave the hospital for the evening as we had hoped. Ariane and Charles Reinhart had graciously arranged tickets for the three of us to see the Fall for Dance performance at City Center. Jilly was eager for Raymond and me to see Shen Wei Arts, a company she has admired and talked to us about for almost seven years. We arrived at City Center with moments to spare, and settled in for a wonderful evening. Thank you, Ariane & Charles!
Although the PEG incident cost Jilly a day of therapy sessions, all the other signs are good. The CAT scan showed that Dr. Kalva was right about the bump on the head, which is already smaller. So today we resume pursuit of our exit strategy.
Our best to all of you,
Ingrid
Wednesday, September 17, 2008
Wednesday, September 17
A few setbacks today, which we hope and believe are minor.
Jillian found a small bump on her head late last night, and this morning the doctor ordered a CAT scan. She thinks it's just some post-op swelling, but the scan was done so late today that it hasn't been read yet. Jilly says it's like a bruise--doesn't hurt unless you press on it.
Even less likely to be a genuine issue but much more distressing to Jilly is pain at the site of the PEG. She's been complaining about it all week and asks every doctor who walks in her door if they can remove the tube. This can be approved only by the doctor who put it in, and he keeps refusing, saying it needs six weeks, which would mean two and a half weeks more! Apparently scar tissue needs to form at the site to ward off damage from gastric juices (I may have this wrong; if there's a medical professional in the house, please go ahead and correct me). The thing is, PEGs are not supposed to be painful. A nuisance, maybe, but not painful. Dr. Kalva, having inspected it to rule out the possibility of infection, thinks perhaps there's a stitch close to the surface that is pulling and causing the pain. It looks as if tomorrow morning the aforementioned doctor who installed the PEG will be in to check it out, and Dr. Kalva has ordered either an abdominal scan (according to the night nurse) or an ultrasound (which is what the doctor told me earlier).
So we have come home rather nervous. Mostly we hope that Jilly gets a good night's sleep so she can better tolerate another test tomorrow; we asked the night nurse to dispense the authorized painkiller as soon as she could and advised her that Jilly refuses to use the call bell. We feel confident in this nurse's attentiveness.
Given these developments, we made only a little progress on our exit strategy. We appreciate the concern the staff has been demonstrating for our convenience, but our top concern is Jillian's recovery. Anything else is a detail we will work out.
Think good thoughts.
Ingrid
Jillian found a small bump on her head late last night, and this morning the doctor ordered a CAT scan. She thinks it's just some post-op swelling, but the scan was done so late today that it hasn't been read yet. Jilly says it's like a bruise--doesn't hurt unless you press on it.
Even less likely to be a genuine issue but much more distressing to Jilly is pain at the site of the PEG. She's been complaining about it all week and asks every doctor who walks in her door if they can remove the tube. This can be approved only by the doctor who put it in, and he keeps refusing, saying it needs six weeks, which would mean two and a half weeks more! Apparently scar tissue needs to form at the site to ward off damage from gastric juices (I may have this wrong; if there's a medical professional in the house, please go ahead and correct me). The thing is, PEGs are not supposed to be painful. A nuisance, maybe, but not painful. Dr. Kalva, having inspected it to rule out the possibility of infection, thinks perhaps there's a stitch close to the surface that is pulling and causing the pain. It looks as if tomorrow morning the aforementioned doctor who installed the PEG will be in to check it out, and Dr. Kalva has ordered either an abdominal scan (according to the night nurse) or an ultrasound (which is what the doctor told me earlier).
So we have come home rather nervous. Mostly we hope that Jilly gets a good night's sleep so she can better tolerate another test tomorrow; we asked the night nurse to dispense the authorized painkiller as soon as she could and advised her that Jilly refuses to use the call bell. We feel confident in this nurse's attentiveness.
Given these developments, we made only a little progress on our exit strategy. We appreciate the concern the staff has been demonstrating for our convenience, but our top concern is Jillian's recovery. Anything else is a detail we will work out.
Think good thoughts.
Ingrid
Tuesday, September 16, 2008
Tuesday, September 16
Well, I hope this evening I am at least starting with the right date. I don't have the nerve to look back and see how many times I've put the wrong one at the top of my posts. I hope and trust my confusion is not contagious, at least online.
At least Jillian always knows what day it is. There's a big calendar on the wall opposite her bed, and many of her therapy sessions start with who, where, and when questions.
Though she often tells us she would love to hang out with just us, Jilly welcomes all her visitors gratefully and graciously, catching up with those she hasn't seen in awhile and extolling their accomplishments to us after they leave. I can't count the number of times she has said, "I have the best people in my life."
Today Ariane Reinhart returned with her father Charles, who is director of the American Dance Festival. ADF has been an important part of Jilly's life since 2001, so she felt particularly honored by this visit, and connected to the summer home that has contributed so much to the person she has become.
Bellevue has come to feel like a kind of home to us, but over the next few days our to-do list is all about an exit strategy. We want to be sure that this is in all respects designed to facilitate and not slow down Jilly's recovery. Eager as we are to return to Albuquerque, we want to be sure that we have a thorough plan covering both the trip itself and arrangements for continuing therapy as required. Every day Jilly becomes more realistic about what she needs; this, with the guidance of the Bellevue staff and the help of friends from all over, should help us with the transition.
Stay tuned!
Ingrid
At least Jillian always knows what day it is. There's a big calendar on the wall opposite her bed, and many of her therapy sessions start with who, where, and when questions.
Though she often tells us she would love to hang out with just us, Jilly welcomes all her visitors gratefully and graciously, catching up with those she hasn't seen in awhile and extolling their accomplishments to us after they leave. I can't count the number of times she has said, "I have the best people in my life."
Today Ariane Reinhart returned with her father Charles, who is director of the American Dance Festival. ADF has been an important part of Jilly's life since 2001, so she felt particularly honored by this visit, and connected to the summer home that has contributed so much to the person she has become.
Bellevue has come to feel like a kind of home to us, but over the next few days our to-do list is all about an exit strategy. We want to be sure that this is in all respects designed to facilitate and not slow down Jilly's recovery. Eager as we are to return to Albuquerque, we want to be sure that we have a thorough plan covering both the trip itself and arrangements for continuing therapy as required. Every day Jilly becomes more realistic about what she needs; this, with the guidance of the Bellevue staff and the help of friends from all over, should help us with the transition.
Stay tuned!
Ingrid
Monday, September 15, 2008
Monday, September 14
For the first time since August 12, when we arrived in New York, Raymond and I spent eight daylight hours outside the confines of Bellevue Hospital. Braving the confusion of Penn Station, we took the Long Island Railroad out to Long Island to visit some old friends from our days in New York. Chuck & Lucy Van Horn served us a fabulous lunch, and Chuck gave us a tour of the setting for The Great Gatsby. We returned, refreshed, and found that Jilly had successfully negotiated a second shopping trip with Rivky, this time to the drug store.
Overall, Jilly's therapy seems to be going well. She is a more willing participant in it and makes more progress every day, at least so it seems to us.
The remaining hurdles are an examination by the neurosurgeons and the removal of the PEG from her stomach. Aside from sporadic headaches, the PEG is her only remaining source of discomfort. Removal of it must be presided over by the surgeons who installed it. It's my understanding that this usually can't be done until six weeks after it was put in--which would be another ten days away; but the rehab doctor is hoping that it can happen sooner.
Today was the five-week anniversary of the accident. Donna Faye Burchfield, Jilly's great mentor, chairman of the dance department at Hollins University, dean of the American Dance Festival, told Jilly the other day that this unfolding story has taught her what hope is, and that it has changed her teaching. Anyone who saw Jilly during the first three to four weeks after she was hurt, then walked into her room today, would understand what Donna Faye means. We are so full of gratitude that we don't know where to put it.
Ingrid
Overall, Jilly's therapy seems to be going well. She is a more willing participant in it and makes more progress every day, at least so it seems to us.
The remaining hurdles are an examination by the neurosurgeons and the removal of the PEG from her stomach. Aside from sporadic headaches, the PEG is her only remaining source of discomfort. Removal of it must be presided over by the surgeons who installed it. It's my understanding that this usually can't be done until six weeks after it was put in--which would be another ten days away; but the rehab doctor is hoping that it can happen sooner.
Today was the five-week anniversary of the accident. Donna Faye Burchfield, Jilly's great mentor, chairman of the dance department at Hollins University, dean of the American Dance Festival, told Jilly the other day that this unfolding story has taught her what hope is, and that it has changed her teaching. Anyone who saw Jilly during the first three to four weeks after she was hurt, then walked into her room today, would understand what Donna Faye means. We are so full of gratitude that we don't know where to put it.
Ingrid
Sunday, September 14, 2008
Sunday Evening
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
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
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
Sunday, September 7, 2008
Sunday, September 7
It's been a beautiful Sunday in NY. Jilly got her first fresh air in four weeks this afternoon. I had arranged to take her downstairs at about lunchtime and asked Ann Liv to bring baby Lovey (is that a great name or what? It's perfectly descriptive of this little sprite). Several other friends showed up as well, and we all stepped out into the Serenity Garden for awhile. It made for a delightful reintroduction to the outside world, and Jilly was even able to admit to being tired as we headed back upstairs. Jilly babysat for Lovey just a week before the accident and is absolutely smitten with her--as we all were today.
Later Paul, who was a witness to the accident and visited earlier, while Jilly was still asleep, stopped by and met her awake for the first time. She pegged his accent as Australian, but it's actually Irish. Paul was the second car stopped at the intersection, so he saw the accident, covered Jilly with a blanket, and talked to her until the EMTs arrived. This makes him another of our heroes. Paul talked a little about what he had seen. I was afraid this might upset Jilly, but this doesn't seem to have happened. She's becoming more aware of the details every day, straightening them out as she goes along. For a few days she thought she had been "attacked," but now talks about being hit by a car.
Last Christmas Jilly gave Raymond and me a gift certificate to a Cuban restaurant that we used to enjoy decades ago in its earlier, much more modest location and incarnation, before the Underground Gourmet made it famous and expensive in the early seventies. The idea was we should use it when we came here in April for Jilly's show at Dance Theater Workshop. Unfortunately we forgot it on that trip--so tonight, with Jeremy and Katie, we enjoyed a wonderful meal there, toasting Jilly and wishing she were there. I don't know what she would have eaten, though: Maybe black beans and plaintains.
And now begins another week. Who knows what it will bring, but we are more hopeful for Jilly's complete recovery every day.
Our best to all,
Ingrid
Later Paul, who was a witness to the accident and visited earlier, while Jilly was still asleep, stopped by and met her awake for the first time. She pegged his accent as Australian, but it's actually Irish. Paul was the second car stopped at the intersection, so he saw the accident, covered Jilly with a blanket, and talked to her until the EMTs arrived. This makes him another of our heroes. Paul talked a little about what he had seen. I was afraid this might upset Jilly, but this doesn't seem to have happened. She's becoming more aware of the details every day, straightening them out as she goes along. For a few days she thought she had been "attacked," but now talks about being hit by a car.
Last Christmas Jilly gave Raymond and me a gift certificate to a Cuban restaurant that we used to enjoy decades ago in its earlier, much more modest location and incarnation, before the Underground Gourmet made it famous and expensive in the early seventies. The idea was we should use it when we came here in April for Jilly's show at Dance Theater Workshop. Unfortunately we forgot it on that trip--so tonight, with Jeremy and Katie, we enjoyed a wonderful meal there, toasting Jilly and wishing she were there. I don't know what she would have eaten, though: Maybe black beans and plaintains.
And now begins another week. Who knows what it will bring, but we are more hopeful for Jilly's complete recovery every day.
Our best to all,
Ingrid
Saturday, September 6, 2008
Saturday, September 7, 2008
On a day when New York was receiving its share of Hurricane Hannah, we were nevertheless able to enjoy some great family time.
This morning Jilly had a great phone conversation with DonnaFaye. Still not sure why she has to be in this place, Jilly is desperate to do everything on her very complicated fall schedule. I am hoping to persuade her that doing even a part of it will depend on how well she does in all her various therapies. She was at least a bit more respectful to today's substitute occupational therapist, not attempting, as far as I could see, to switch roles with her. Our relationship during her teenage years has resurfaced, as she does her best to bargain with me in pursuit of my help in getting out of the hospital.
When I explained to Jilly today that her neurosurgeons will have to clear her for release, she began to question me about the surgeries. I tried to answer her both directly and delicately, first asking her to stop me if it upset her too much. Luckily, my understanding and my sketching skills are too rudimentary to incorporate many disturbing details--but the explanation still upset Jilly. I do hope telling her about it was not a mistake; I just felt she needed to understand how badly she was hurt as part of the process of accepting the treatment period.
With Jeremy and Katie, we managed to pull off an odd little party in one of the public rooms on the floor. Unsuccessfully tring to dodge the raindrops, Raymond and I were able to find a nearby deli with lovely pasta salads, a small portion of which turned out to be the first full serving of anything she has completed. We also bought some goodies, and of course several delicious beverages.
After this rain, I'm here to tell you that it ain't easy being a New Yorker. Every day wears me out--but Raymond and I (knock on wood) remain in excellent health. Just another in our long chain of post 8/11 miracles.
Our best to all,
Ingrid
This morning Jilly had a great phone conversation with DonnaFaye. Still not sure why she has to be in this place, Jilly is desperate to do everything on her very complicated fall schedule. I am hoping to persuade her that doing even a part of it will depend on how well she does in all her various therapies. She was at least a bit more respectful to today's substitute occupational therapist, not attempting, as far as I could see, to switch roles with her. Our relationship during her teenage years has resurfaced, as she does her best to bargain with me in pursuit of my help in getting out of the hospital.
When I explained to Jilly today that her neurosurgeons will have to clear her for release, she began to question me about the surgeries. I tried to answer her both directly and delicately, first asking her to stop me if it upset her too much. Luckily, my understanding and my sketching skills are too rudimentary to incorporate many disturbing details--but the explanation still upset Jilly. I do hope telling her about it was not a mistake; I just felt she needed to understand how badly she was hurt as part of the process of accepting the treatment period.
With Jeremy and Katie, we managed to pull off an odd little party in one of the public rooms on the floor. Unsuccessfully tring to dodge the raindrops, Raymond and I were able to find a nearby deli with lovely pasta salads, a small portion of which turned out to be the first full serving of anything she has completed. We also bought some goodies, and of course several delicious beverages.
After this rain, I'm here to tell you that it ain't easy being a New Yorker. Every day wears me out--but Raymond and I (knock on wood) remain in excellent health. Just another in our long chain of post 8/11 miracles.
Our best to all,
Ingrid
Friday, September 5, 2008
Friday, September 5
What a treat to welcome Jeremy (brother) and future sister-in-law Katie today. They had both gone back to ABQ before Jilly's move to the Rehab floor, so were really seeing her conscious for the first time.
So many stories today, I don't know which to tell.
Occupational and physical therapy sessions wear Jilly out, but she is making her peace with them. Today she walked into the PT room, showed me to a seat, and headed straight for the treadmill. She set the machine for five minutes, with a slowly increasing speed, before the therapist had a chance to tell her what to do. Later she told a friend that the PT was "Ok, but you know..." with a gesture that said "way too athletic." She has promised (threatened?) to give the therapist a ballet barre next week.
Jilly's usual speech therapist was off today, and as all interesting students do, she gave the sub a run for her money. She found one of the exercises silly, and took her own therapeutic approach: "Well, I think if you want to say it that way, you should go for it." At the end of the session, she pretty much switched roles with the therapist, encouraging her to admit that she'd like to be a famous writer. They talked about good memoirists for awhile; then Jilly told her, "You need to get an MFA. You should go to Bard. Or Columbia. A friend of mine went there. She's amazing." The therapist walked out the door shaking her head.
Jilly still can't figure out why so many people are able to visit her in London. She is asking for some details about the accident, but doesn't want to know too much. Wise girl. Two of the wonderful nurses from the ICU came down to see her today, on the verge of tears over how great she looks. She does not remember them at all, of course, but enjoyed the stories of how every fifteen minutes they had to unwind the cords and cables she'd tangled herself in with all her movements.
If I'm this sleepy, it must be the end of another poignant day.
All my best,
Ingrid
So many stories today, I don't know which to tell.
Occupational and physical therapy sessions wear Jilly out, but she is making her peace with them. Today she walked into the PT room, showed me to a seat, and headed straight for the treadmill. She set the machine for five minutes, with a slowly increasing speed, before the therapist had a chance to tell her what to do. Later she told a friend that the PT was "Ok, but you know..." with a gesture that said "way too athletic." She has promised (threatened?) to give the therapist a ballet barre next week.
Jilly's usual speech therapist was off today, and as all interesting students do, she gave the sub a run for her money. She found one of the exercises silly, and took her own therapeutic approach: "Well, I think if you want to say it that way, you should go for it." At the end of the session, she pretty much switched roles with the therapist, encouraging her to admit that she'd like to be a famous writer. They talked about good memoirists for awhile; then Jilly told her, "You need to get an MFA. You should go to Bard. Or Columbia. A friend of mine went there. She's amazing." The therapist walked out the door shaking her head.
Jilly still can't figure out why so many people are able to visit her in London. She is asking for some details about the accident, but doesn't want to know too much. Wise girl. Two of the wonderful nurses from the ICU came down to see her today, on the verge of tears over how great she looks. She does not remember them at all, of course, but enjoyed the stories of how every fifteen minutes they had to unwind the cords and cables she'd tangled herself in with all her movements.
If I'm this sleepy, it must be the end of another poignant day.
All my best,
Ingrid
Thursday, September 4, 2008
Late Thursday, September 4
Yesterday morning when I walked into Jilly's room she was sporting an orange-sherbet trache tube, which replaced the old lime-sherbet one. When I said "Good morning, Jilly. How are you doing today?" she whispered, audibly, "I'm good. How are you." That was enough to make my heart jump, so imagine how I felt this morning when I walked in, saw no sherbet tube at all, and heard her speak the exact same words!
So Jilly can now speak--hoarsely but understandably--and they bring her a tray of food three times a day. She eats a little, but is mostly interested in liquids: vitamin water, regular water, root beer. Now that soy latte is in her reach, it's not what she asks for.
I can't say enough about Jilly's occupational therapist, Rivky, and her physical therapist, whose name I keep forgetting (maybe I'm the one who needs therapy). She starts off the sessions saying she's just too tired, and could they come back later, but they jolly her along until she gives the activities a try. Today, after she had spent several minutes on the treadmill, I asked her how that felt. She answered, "Good. I was thinking maybe I could actually do this."
Some of these stories may sound as if Jilly is almost back to normal, and I don't mean to imply that at all. She's quite frail, still rather shaky, and confused about many things. But people who haven't seen her for a few days are amazed at her progress. We hope to learn more in a meeting with her doctors tomorrow morning.
Meanwhile, I need sleep!
As always, thanks to all.
Ingrid
So Jilly can now speak--hoarsely but understandably--and they bring her a tray of food three times a day. She eats a little, but is mostly interested in liquids: vitamin water, regular water, root beer. Now that soy latte is in her reach, it's not what she asks for.
I can't say enough about Jilly's occupational therapist, Rivky, and her physical therapist, whose name I keep forgetting (maybe I'm the one who needs therapy). She starts off the sessions saying she's just too tired, and could they come back later, but they jolly her along until she gives the activities a try. Today, after she had spent several minutes on the treadmill, I asked her how that felt. She answered, "Good. I was thinking maybe I could actually do this."
Some of these stories may sound as if Jilly is almost back to normal, and I don't mean to imply that at all. She's quite frail, still rather shaky, and confused about many things. But people who haven't seen her for a few days are amazed at her progress. We hope to learn more in a meeting with her doctors tomorrow morning.
Meanwhile, I need sleep!
As always, thanks to all.
Ingrid
Giant Soy Latte In Jilly's Future
Not only was Jillian's trach downgraded in size yesterday but she also passed her swallow test, which means she's one step closer to being allowed to drink that latte she's been demanding. (Very little ice and sweetener!)
Tuesday, September 2, 2008
For New York Friends: Visiting Hours Note
This morning we spoke with the social worker for the rehab floor. The staff has expressed concern that visitors who stay too long are overstimulating Jillian, resulting in less sleep for her at night and consequently a lower ability to concentrate the next day during her therapy sessions. We get so excited by her progress that we forget what a long way she has to go. The therapy is critical; it is her way back to health. So please plan to limit your visits with Jilly to 20 minutes. The two-at-a-time rule also prevails. Either Raymond or I will hover throughout visiting hours around the orange-&-white seats or just beyond, where the less chairs are less colorful but more comfortable. We will call whoever is up wih Jilly to bring down a pass.
Each visit means a lot to Jilly, and to us. Please help us support the staff's efforts and Jilly's recovery by respecting this new rule, which is a compromise between their wishes and ours.
Thank you,
Ingrid
Each visit means a lot to Jilly, and to us. Please help us support the staff's efforts and Jilly's recovery by respecting this new rule, which is a compromise between their wishes and ours.
Thank you,
Ingrid
Monday, September 1, 2008
Labor Day Update
Today, Jilly had many moments of great lucidity ad wit. We have to remind ourselves, and her, that she still has quite a way to go. The hospital's art therapist visited, bringing a brand-new box of oil pastels and a nice fresh pad of art paper. Jilly responded to her well, selecting three colors when asked, but turned away from the materials to her computer, which is where she creates her own art. She's not quite ready for that either, but she did agree to see the therapist tomorrow.
This morning we think she was asking when her occupational therapist, whom she really likes, would be coming. This being a holiday, there was no scheduled therapy at all; I think the art therapist just came in because she wanted to get Jilly started.
Thanks to the resident on the floor, Jilly has her walking privileges back, which is a relief to us. It is much easier to follow in her wake than to keep her in her room or on her wheelchair. Her posture is what it always was, her speed is remarkable, and today we only set off the perimeter alarm once. I blame it on Raymond; anyone who knows me realizes I would never try to help her bust out.
The other rule she asks every visitor to help her break is the ban on beverages. She is not above scooping water from the bathroom sink, and she has made a lunge for a water bottle in my tote more than once.
The end of the day is Jillian's most difficult time, as visitors head for home. She pleads to leave at that time, and is only beginning to understand that she cannot. We talked a bit about the accident today; I got the feeling she thought for a moment she had caused it herself and had perhaps even been driving, but I think we got past that.
We have hard moments, many times a day, but the great kindness of an enormous circle of friends from our world and Jilly's much wider one has become a sacred trust to me. I promise all of you that we will settle for nothing less than a full recovery for our remarkable daughter, and once again thank you all from the bottom of my heart.
This morning we think she was asking when her occupational therapist, whom she really likes, would be coming. This being a holiday, there was no scheduled therapy at all; I think the art therapist just came in because she wanted to get Jilly started.
Thanks to the resident on the floor, Jilly has her walking privileges back, which is a relief to us. It is much easier to follow in her wake than to keep her in her room or on her wheelchair. Her posture is what it always was, her speed is remarkable, and today we only set off the perimeter alarm once. I blame it on Raymond; anyone who knows me realizes I would never try to help her bust out.
The other rule she asks every visitor to help her break is the ban on beverages. She is not above scooping water from the bathroom sink, and she has made a lunge for a water bottle in my tote more than once.
The end of the day is Jillian's most difficult time, as visitors head for home. She pleads to leave at that time, and is only beginning to understand that she cannot. We talked a bit about the accident today; I got the feeling she thought for a moment she had caused it herself and had perhaps even been driving, but I think we got past that.
We have hard moments, many times a day, but the great kindness of an enormous circle of friends from our world and Jilly's much wider one has become a sacred trust to me. I promise all of you that we will settle for nothing less than a full recovery for our remarkable daughter, and once again thank you all from the bottom of my heart.
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