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
Monday, September 22, 2008
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
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