One day during Bellevue visiting hours, when we had asked that visits be limited to a half hour, one of Jillian’s friends said on her way upstairs, “I’ll try to stay in the time limit, but it feels so good to spend time with Jilly that I just don’t want to leave.” So now it’s time for a bit of self-pity from her parents, who, after spending so many hours a day in her company, will have to say good-bye to her soon. We’ve done it before, so we can do it again, especially since she’ll join us in Michigan for Thanksgiving.*
Here in New Mexico, Jilly has been seeing an acupuncturist and a therapist. She’s been focusing on regaining strength and getting her head around what happened to her. Now it’s time for her to check in with her Bellevue doctors and have them check out several small symptoms that are more annoying than debilitating: clogged ears, the not-quite-healed PEG site, sore knees. She’ll also call on them to help her find the level of activity that will facilitate continued healing as she satisfies her urge to get back to her full life.
On Saturday, Jilly boards a plane for New York (yes, Miss Karen**, she will have to fly alone, and yes, we too are worried about that). I’m counting on her many friends there to make sure she plans her days to allow for plenty of rest. New Yorkers, if you see her out past midnight, call her a cab. If you notice that she’s gone quiet and doesn’t seem to have an opinion about anything, take her home. All you wonderful people helped her through those early days, and I know you’ll look after her now, too.
All our best,
Ingrid
* Some of you may remember that Raymond and I had our annual Michigan trip scheduled to begin on August 20. I miss my family, so we’re going next month.
* * Miss Karen was Jilly’s dance teacher from age three through high school whom we visited yesterday. She thinks we should still get to tell Jilly what to do. I think so, too, but the law is not on my side.
Thursday, October 16, 2008
Tuesday, October 7, 2008
Albuquerque Days
Even when I was exhausted at the end of a day in the hospital, it seemed easier to write and post a recap here on the blog that it is now that we're out here in Albuquerque. I guess there was a sense of urgency that has, I'm glad to report, dissipated.
We are all getting our bearings now that we are back the high desert. Raymond is at work on his Census Bureau assignments for the month of October. As I feared (or maybe expected? or maybe hoped? I'm not sure which), I find myself unemployed. I am now soulsearching and mindsearching to determine how to replace that income in a more satisfying way. After six weeks in the company of dedicated hospital workers and thoughtful, generous friends, I am relieved to contemplate a future that incorporates more of these qualities than my past employment has. This does not mean I have reached an equilibrium or developed a plan, only that I am beginning to see possibility in this setback.
And it's really the only setback. Jilly is resting a lot. She has developed a healthy appetite--albeit a highly specific one. We have been to Whole Foods several times to stock up on all the vegetables, homeopathic remedies, supplements, and teas she believes will help her healing. Our refrigerator, which Jeremy and Katie had kindly emptied before we came home, is now full of stuff Raymond and I would probably never buy. We taste some of it, but for now I am skipping the brewer's yeast and the apple cider vinegar. I am also giving kale and beets a wide berth.
Last week Jillian met with several different types of therapist. The hospital-based outpatient program to which Bellevue had referred us evaluated her status and determined that she didn't need them. A psychiatrist who is a friend of Lizzy Goodman told Jilly that what she needs now is to talk with friends and family and get back to her art. This consensus has confirmed our sense of the daily improvement Jilly has shown. The symptoms the Bellevue therapists were still noticing when we left the hospital have cleared up as she has proceeded with taking back her life.
What remain, besides the need to rebuild physical strength, are discrete symptoms that relate to her original injuries in different ways. To address these, Jilly is working with another psychiatrist, a cousin of her friend Amber's stepfather, and his wife, a doctor of Oriental medicine. They work together to determine what acupuncture points to target and to assess whether or not they are working. Jilly objects to every needle, but is susceptible to persuasion. In addition to the acupunture, the doctor recommended various supplements.
On Sunday we invited family and extended family to our home, to give us a chance to thank them for all the support they gave us during the Bellevue weeks and them an opportunity to see how well Jillian is doing. It was a great day.
But in so many ways, all our days are great days now.
All our best to everybody,
Ingrid
We are all getting our bearings now that we are back the high desert. Raymond is at work on his Census Bureau assignments for the month of October. As I feared (or maybe expected? or maybe hoped? I'm not sure which), I find myself unemployed. I am now soulsearching and mindsearching to determine how to replace that income in a more satisfying way. After six weeks in the company of dedicated hospital workers and thoughtful, generous friends, I am relieved to contemplate a future that incorporates more of these qualities than my past employment has. This does not mean I have reached an equilibrium or developed a plan, only that I am beginning to see possibility in this setback.
And it's really the only setback. Jilly is resting a lot. She has developed a healthy appetite--albeit a highly specific one. We have been to Whole Foods several times to stock up on all the vegetables, homeopathic remedies, supplements, and teas she believes will help her healing. Our refrigerator, which Jeremy and Katie had kindly emptied before we came home, is now full of stuff Raymond and I would probably never buy. We taste some of it, but for now I am skipping the brewer's yeast and the apple cider vinegar. I am also giving kale and beets a wide berth.
Last week Jillian met with several different types of therapist. The hospital-based outpatient program to which Bellevue had referred us evaluated her status and determined that she didn't need them. A psychiatrist who is a friend of Lizzy Goodman told Jilly that what she needs now is to talk with friends and family and get back to her art. This consensus has confirmed our sense of the daily improvement Jilly has shown. The symptoms the Bellevue therapists were still noticing when we left the hospital have cleared up as she has proceeded with taking back her life.
What remain, besides the need to rebuild physical strength, are discrete symptoms that relate to her original injuries in different ways. To address these, Jilly is working with another psychiatrist, a cousin of her friend Amber's stepfather, and his wife, a doctor of Oriental medicine. They work together to determine what acupuncture points to target and to assess whether or not they are working. Jilly objects to every needle, but is susceptible to persuasion. In addition to the acupunture, the doctor recommended various supplements.
On Sunday we invited family and extended family to our home, to give us a chance to thank them for all the support they gave us during the Bellevue weeks and them an opportunity to see how well Jillian is doing. It was a great day.
But in so many ways, all our days are great days now.
All our best to everybody,
Ingrid
Wednesday, October 1, 2008
Back to Albuquerque!
Last Tuesday after her liberation from Bellevue, Jillian enjoyed a wonderful evening with friends (see earlier blog note). Her mantra, as it has been since she awakened in Week 3, remains "I have the best people in my life." Thanks to all who joined her (for her, alcohol-free) celebration, which was not just a return to normalcy but a better-than-normal reminder of how rich and fortunate her life has been and promises to continue to be.
The only difficulty involving our departure from New York was rising at an outrageous hour on Wednesday morning. Even that had an up side: At that hour the street to our sublet was still unblocked, and the traffic was light all the way to LaGuardia. On both flights, Jilly did experience some discomfort, mostly from that pesky PEG site, along with some headache and lightheadedness.
We arrived in Albuquerque to the news that Raymond's brother-in-law had had a heart attack the week before--and his wife had waited to tell us because we were still concerned about Jilly. Some readers may not know this, but when we learned about Jilly's accident we were at a local hospital where a sister-in-law had just died. Superstition has it that bad things come in threes, so I choose to believe we are done with sad events for awhile. At least two of these three have had a happy outcome: We visited Martin on Sunday and found him almost good as new.
And Jilly is better every day. Our first outing was to Whole Foods, where we stocked up on homeopathic remedies, herbal teas, and all kinds of healthy stuff. Avocados, brussels sprouts, black beans--for these and many other foods Raymond and I share Jilly's enthusiasm. Kale, brewers' yeast, beets--not so much. We're working it out.
Best of all, we have ended our seven-week green-chile deprivation with lunch at Monroe's, our favorite Mexican restaurant. Any time of day is a good time for huevos rancheros, our best confirmation that we are home again. Even our dog Maisy, lovingly cared for through our Bellevue days by our dear friend Melanie Wegner, is home at last. Thank you, Mel!
We have spent the last several days setting up and getting to followup appointments for Jillian, with the intention of setting up a therapy schedule as soon as possible. We're still processing what we've learned so far, so I'll report on it tomorrow.
We hear the temperature has dropped in New York. Here today the sky is bright blue, and it's in the low 80's, with a cooling trend (and unfortunately a bit of breeze) forecast for this weekend, the start of the International Balloon Fiesta. We do not miss the humidity.
But we do miss all our NY friends! Our best to all of you--and our continued great thanks as well.
Ingrid
The only difficulty involving our departure from New York was rising at an outrageous hour on Wednesday morning. Even that had an up side: At that hour the street to our sublet was still unblocked, and the traffic was light all the way to LaGuardia. On both flights, Jilly did experience some discomfort, mostly from that pesky PEG site, along with some headache and lightheadedness.
We arrived in Albuquerque to the news that Raymond's brother-in-law had had a heart attack the week before--and his wife had waited to tell us because we were still concerned about Jilly. Some readers may not know this, but when we learned about Jilly's accident we were at a local hospital where a sister-in-law had just died. Superstition has it that bad things come in threes, so I choose to believe we are done with sad events for awhile. At least two of these three have had a happy outcome: We visited Martin on Sunday and found him almost good as new.
And Jilly is better every day. Our first outing was to Whole Foods, where we stocked up on homeopathic remedies, herbal teas, and all kinds of healthy stuff. Avocados, brussels sprouts, black beans--for these and many other foods Raymond and I share Jilly's enthusiasm. Kale, brewers' yeast, beets--not so much. We're working it out.
Best of all, we have ended our seven-week green-chile deprivation with lunch at Monroe's, our favorite Mexican restaurant. Any time of day is a good time for huevos rancheros, our best confirmation that we are home again. Even our dog Maisy, lovingly cared for through our Bellevue days by our dear friend Melanie Wegner, is home at last. Thank you, Mel!
We have spent the last several days setting up and getting to followup appointments for Jillian, with the intention of setting up a therapy schedule as soon as possible. We're still processing what we've learned so far, so I'll report on it tomorrow.
We hear the temperature has dropped in New York. Here today the sky is bright blue, and it's in the low 80's, with a cooling trend (and unfortunately a bit of breeze) forecast for this weekend, the start of the International Balloon Fiesta. We do not miss the humidity.
But we do miss all our NY friends! Our best to all of you--and our continued great thanks as well.
Ingrid
Monday, September 29, 2008
Our Last Day at Bellevue
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
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 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.
Sunday, August 31, 2008
Sunday, August 31
Yesterday was a long day, mostly because there was no therapy. We encouraged Jilly to rest a lot, and brought up fewer visitors than on past days. Gina Kourias, who interviewed Jillian for Time Out New York before the showing of Mothership at Dance Theater Workshop this spring, visited. Though they had only met a few times, Jilly recognized Gina, which encouraged us. Amber and Zari napped and meditated with her late in the day to ease the transition to nighttime.
No therapy again today, so we are planning a day of beauty, with a few simple games as well. We're sure the condition of her nails would shock her, and hope that the games will help maintain the ground gained in her attention span by the exercises the therapists do.
Raymond and I have fallen into a routine of stopping at the Lyric Diner on 22nd and Third, just a few blocks from where we are staying, for a light supper each night. It's pretty much simple comfort food, which is what we need these days. We were able to catch high points of the Democratic Convention last week; I guess the Republicans are up next.
I'll talk to you all tomorrow.
All our best,
Ingrid & Ray
No therapy again today, so we are planning a day of beauty, with a few simple games as well. We're sure the condition of her nails would shock her, and hope that the games will help maintain the ground gained in her attention span by the exercises the therapists do.
Raymond and I have fallen into a routine of stopping at the Lyric Diner on 22nd and Third, just a few blocks from where we are staying, for a light supper each night. It's pretty much simple comfort food, which is what we need these days. We were able to catch high points of the Democratic Convention last week; I guess the Republicans are up next.
I'll talk to you all tomorrow.
All our best,
Ingrid & Ray
Saturday, August 30, 2008
A special visitor...
Yesterday we had a visit from Theresa Sereo, a singer/songwriter who was involved in a serious accident in 2006 just blocks from Bellevue. She was treated in the trauma clinic, then SICU, on the same floor as Jilly, then underwent her entire rehab period on the sixth floor, where Jilly is now. As you can see on her Web site (http://www.theresasareo.com/), she was able to resume her performing career with great success after this major trauma and now volunteers as a counselor for families of traumatic injury victims.
Theresa gave us valuable advice and heartfelt encouragement. She is living proof that an artist can bring herself back to a full and rewarding career after severe trauma. She also talked to us about Bellevue's art therapy program and sent the head of it to meet Jilly immediately. One problem with an institution the size of Bellevue is that it takes time and savvy to learn about resources that may be just down the hall, so hearing about and understanding the scope of this one so early is a real blessing.
Thank you, Theresa!
Ingrid & Ray
Theresa gave us valuable advice and heartfelt encouragement. She is living proof that an artist can bring herself back to a full and rewarding career after severe trauma. She also talked to us about Bellevue's art therapy program and sent the head of it to meet Jilly immediately. One problem with an institution the size of Bellevue is that it takes time and savvy to learn about resources that may be just down the hall, so hearing about and understanding the scope of this one so early is a real blessing.
Thank you, Theresa!
Ingrid & Ray
Saturday, August 30, 2008
Hi, this is Ingrid.
I think I've finally learned how to post on this blog! When we get back from the hospital at night, I am usually just worn out--too tired to figure it all out. This morning Raymond has gone to be with Jilly, so I am able to concentrate for a few minutes.
After a rough first day or two, Jilly is settling into the routines of the Rehab floor. Weekdays she has several therapy sessions per day: speech, occupational, physical. Her ability to concentrate has risen a bit each day, and after a physical therapy session, her oxygen level is high enough to allow her to go without that "hose" thing for the rest of the day. Next week they will be weaning her off the trach, improving her comfort level and, we hope, allowing her to begin speaking.
We have been trying to determine how best to "manage" her visitor schedule, and she is beginning to participate in this task. Yesterday she wrote a note that said, "Tell everyone they have 5 minutes." We have allowed more than that, but are being careful about the two-at-a-time rule. The two of us have 24-hour passes.
On the lighter side, Jilly has been trying to implicate her friends when she wants to ignore instructions or rules. The other day a nurse put ointment in her eyes and said, "Now don't wipe that off." As soon as the nurse was gone, Jilly grabbed Zari's hand and used it to get rid of most of the ointment. Zari says, "I was framed!"
Jilly is also imploring some of her friends to help her bust out of Bellevue. I think she knows who might be a soft touch, and she tells them "Let's just go!" She has asked for "delicious beverages" and "milky substances," and keeps thinking someone will bring us all a beer soon.
While they are pleased with Jilly's progress, her doctors are still saying four to six weeks in Bellevue. We are putting our ducks in a row to facilitate and support this as best we can.
On a few occasions I have had to be a bit of a troublemaker (there was an unpleasant moment involving an intimidating security guard), and I want you all to know that the support we are feeling from all corners of Jilly's world have given me the strength to behave in ways to which I am not generally accustomed. You are all angels in my eyes.
Many thanks,
Ingrid
I think I've finally learned how to post on this blog! When we get back from the hospital at night, I am usually just worn out--too tired to figure it all out. This morning Raymond has gone to be with Jilly, so I am able to concentrate for a few minutes.
After a rough first day or two, Jilly is settling into the routines of the Rehab floor. Weekdays she has several therapy sessions per day: speech, occupational, physical. Her ability to concentrate has risen a bit each day, and after a physical therapy session, her oxygen level is high enough to allow her to go without that "hose" thing for the rest of the day. Next week they will be weaning her off the trach, improving her comfort level and, we hope, allowing her to begin speaking.
We have been trying to determine how best to "manage" her visitor schedule, and she is beginning to participate in this task. Yesterday she wrote a note that said, "Tell everyone they have 5 minutes." We have allowed more than that, but are being careful about the two-at-a-time rule. The two of us have 24-hour passes.
On the lighter side, Jilly has been trying to implicate her friends when she wants to ignore instructions or rules. The other day a nurse put ointment in her eyes and said, "Now don't wipe that off." As soon as the nurse was gone, Jilly grabbed Zari's hand and used it to get rid of most of the ointment. Zari says, "I was framed!"
Jilly is also imploring some of her friends to help her bust out of Bellevue. I think she knows who might be a soft touch, and she tells them "Let's just go!" She has asked for "delicious beverages" and "milky substances," and keeps thinking someone will bring us all a beer soon.
While they are pleased with Jilly's progress, her doctors are still saying four to six weeks in Bellevue. We are putting our ducks in a row to facilitate and support this as best we can.
On a few occasions I have had to be a bit of a troublemaker (there was an unpleasant moment involving an intimidating security guard), and I want you all to know that the support we are feeling from all corners of Jilly's world have given me the strength to behave in ways to which I am not generally accustomed. You are all angels in my eyes.
Many thanks,
Ingrid
Thursday, August 28, 2008
Generosity
Thank you so much to everyone who has donated to help Jillian and her family during her recovery. We have been so touched by the enormous response to our request for help. Jillian's friends from all over the world, people who have been inspired by Jillian's work and others who just heard Jillian's story and felt compelled to give have sent in donations and loving messages to aid in her recovery. The great news is that Jillian is improving every day. She even began to write yesterday and the first thing she scribbled down was her name, "Jillian."
More than 75 people have sent in gifts, some giving large sums and others giving only what they can. We know that Jillian and her family are so grateful for each and every dollar (or Euro!) that you have contributed.
Thank you again and please keep sending Jilly your love and good thoughts.
Love,
Friends of Jillian
More than 75 people have sent in gifts, some giving large sums and others giving only what they can. We know that Jillian and her family are so grateful for each and every dollar (or Euro!) that you have contributed.
Thank you again and please keep sending Jilly your love and good thoughts.
Love,
Friends of Jillian
Monday, August 25, 2008
Jillian Pena Family Fund
Dear Friends,
As you all know, on Monday August, 11th, Jillian Pena, was hit by a car while crossing the street in Brooklyn, New York. For those of you who don't know, Jillian was in New York this summer working on several dance related projects. In the fall she was planning to return to her PhD program at Goldsmiths at the University of London where she was studying practice-based fine arts. Previously, Jillian had received her MFA in Studio Art & Performance at the Art Institute of Chicago.
She was taken to Bellevue Hospital in Manhattan where she underwent emergency surgery to manage bleeding in her brain. Jillian is currently stable but not completely responsive. The next step is for Jillian to undergo intensive rehab in New York.
Like many artists and students, Jillian is uninsured. Her parents, Ingrid and Raymond Pena, are in New York managing Jillian's recovery and organizing the details of her care. They will be staying indefinitely. On their behalf, we will be accepting donations to go towards Jillian's family's expenses.
PayPal donations can be made by logging into your own PayPal account at www.paypal.com (if you don't yet have one, you can sign up there as well,) going to the 'send money' tab and entering the email address donations4jillian@gmail.com.
Any help you can give during this difficult time will be greatly appreciated.
Sincerely,
Friends of Jillian
As you all know, on Monday August, 11th, Jillian Pena, was hit by a car while crossing the street in Brooklyn, New York. For those of you who don't know, Jillian was in New York this summer working on several dance related projects. In the fall she was planning to return to her PhD program at Goldsmiths at the University of London where she was studying practice-based fine arts. Previously, Jillian had received her MFA in Studio Art & Performance at the Art Institute of Chicago.
She was taken to Bellevue Hospital in Manhattan where she underwent emergency surgery to manage bleeding in her brain. Jillian is currently stable but not completely responsive. The next step is for Jillian to undergo intensive rehab in New York.
Like many artists and students, Jillian is uninsured. Her parents, Ingrid and Raymond Pena, are in New York managing Jillian's recovery and organizing the details of her care. They will be staying indefinitely. On their behalf, we will be accepting donations to go towards Jillian's family's expenses.
PayPal donations can be made by logging into your own PayPal account at www.paypal.com (if you don't yet have one, you can sign up there as well,) going to the 'send money' tab and entering the email address donations4jillian@gmail.com.
Any help you can give during this difficult time will be greatly appreciated.
Sincerely,
Friends of Jillian
moving on down!
Dear Friends,
Jillian is being moved out of the ICU! She will be moved to the 6th floor at Bellvue. This is great news. :))) (big smile)
So, the visiting situation on this floor is a bit more regulated. They enforce a two person only policy. The visiting hours are as follows:
Monday - Friday 4pm to 8pm
Saturday - 2pm to 8pm
Sunday - 11am to 8pm
We will know more about the specifics of this floor soon. In the meanwhile Amber Bemak will be coordinating a sign up sheet so we do not all overlap and get turned away. She can be reached here: 413-687-8107
Also, Ingrid has requested that people send fun pictures of people/places/things that Jillian loves to put up around her room. You can email me photos that I can print out if you are far away - flockofsiegelproductions@gmail.
Thanks to everyone. XO.
Jillian is being moved out of the ICU! She will be moved to the 6th floor at Bellvue. This is great news. :))) (big smile)
So, the visiting situation on this floor is a bit more regulated. They enforce a two person only policy. The visiting hours are as follows:
Monday - Friday 4pm to 8pm
Saturday - 2pm to 8pm
Sunday - 11am to 8pm
We will know more about the specifics of this floor soon. In the meanwhile Amber Bemak will be coordinating a sign up sheet so we do not all overlap and get turned away. She can be reached here: 413-687-8107
Also, Ingrid has requested that people send fun pictures of people/places/things that Jillian loves to put up around her room. You can email me photos that I can print out if you are far away - flockofsiegelproductions@gmail.
Thanks to everyone. XO.
Saturday, August 23, 2008
Saturday 8/23 morning update
FROM INGRID:
They’re starting to do some therapy with Jillian. They did quite a bit yesterday, and someone is anticipated to come in this weekend (although the weekend schedule may be less regular than the weekday arrangement).
Jillian enjoys a few minutes at a time sitting in a chair, and stands up every once in a while with the help of nurses.
Sometimes Jillian will point and flex her foot repeatedly when asked to do so.
-Yve (11:15am)
They’re starting to do some therapy with Jillian. They did quite a bit yesterday, and someone is anticipated to come in this weekend (although the weekend schedule may be less regular than the weekday arrangement).
Jillian enjoys a few minutes at a time sitting in a chair, and stands up every once in a while with the help of nurses.
Sometimes Jillian will point and flex her foot repeatedly when asked to do so.
-Yve (11:15am)
Friday, August 22, 2008
Friday Morning
Jillian had a wild night. She was moving around quite a bit and, with the help of her nurses, was able to stand up briefly early this morning. All this activity has subsided somewhat and now Jilly is having a quiet day. She's been spending more time in a near-sitting position and the swelling in her left eye has gone way down.
The constant stream of fans who are showing up to play Jillian music or read to her or talk to her about the genius of Party of Five are trying to keep our theories to ourselves, as Jillian really seems to need sleep today.
She is not responding to commands as well today as she was yesterday but this doesn't concern Jilly's doctors. Her progress is slow but steady.
We're looking forward to Jillian having a quiet, restorative weekend.
Yours,
Lizzy and Ariel
The constant stream of fans who are showing up to play Jillian music or read to her or talk to her about the genius of Party of Five are trying to keep our theories to ourselves, as Jillian really seems to need sleep today.
She is not responding to commands as well today as she was yesterday but this doesn't concern Jilly's doctors. Her progress is slow but steady.
We're looking forward to Jillian having a quiet, restorative weekend.
Yours,
Lizzy and Ariel
Thursday, August 21, 2008
From Ingrid & Raymond
Thursday August 21, 9 AM
Doctors came in this morning and asked Jillian to hold up 2 fingers which she did on command.
She also nodded appropriately to questions.
She is sitting up in a chair. Ingrid is working on making it a throne.
-Erika
Doctors came in this morning and asked Jillian to hold up 2 fingers which she did on command.
She also nodded appropriately to questions.
She is sitting up in a chair. Ingrid is working on making it a throne.
-Erika
Wednesday, August 20, 2008
Wed Aug 20 Night
Jillian has been moving in new and exciting ways.
Jesse commented today that the way she is moving looks so "Jillian." Her everyday gestures as well as how she dances all combined into one.
I experienced for the first time today (although some people experienced this yesterday) Jillian opening her right eye. She locks her focus on you if you are in front of her. My reaction was sort of like, "Hey! Jillian, it's Erika. I love you!" It is so breathtaking. It is so beautiful to see her blink.
Last night those who were in her room all night said that she was REALLY moving her body all around. Grabbing onto sides of the bed and pulling herself in various directions sometimes looking like she wanted to sit up. Also they said that she was running her hand through her hair and also feeling her face. At one point she actually opened her own eyelid with her own hand! Donna Faye asked her to do it again (amazed), and she did!
Sometimes she furrows her brow.
Some people have suggested that we play lots of music for her.
Does anybody have any comfortable, over-sized headphones we could borrow? At the moment, we play music from iPhones, computers, iPods with those little hard white headphones.
As you can tell, everyone has their own reading on what Jillian "means" by the way she is responding/communicating. I like hearing everyone's interpretations.
Ingrid has a theory. Most people come out of comas mind first, then body. She thinks that Jillian is waking up with her body first and her mind will follow. Pretty cool, huh?
Erika
Jesse commented today that the way she is moving looks so "Jillian." Her everyday gestures as well as how she dances all combined into one.
I experienced for the first time today (although some people experienced this yesterday) Jillian opening her right eye. She locks her focus on you if you are in front of her. My reaction was sort of like, "Hey! Jillian, it's Erika. I love you!" It is so breathtaking. It is so beautiful to see her blink.
Last night those who were in her room all night said that she was REALLY moving her body all around. Grabbing onto sides of the bed and pulling herself in various directions sometimes looking like she wanted to sit up. Also they said that she was running her hand through her hair and also feeling her face. At one point she actually opened her own eyelid with her own hand! Donna Faye asked her to do it again (amazed), and she did!
Sometimes she furrows her brow.
Some people have suggested that we play lots of music for her.
Does anybody have any comfortable, over-sized headphones we could borrow? At the moment, we play music from iPhones, computers, iPods with those little hard white headphones.
As you can tell, everyone has their own reading on what Jillian "means" by the way she is responding/communicating. I like hearing everyone's interpretations.
Ingrid has a theory. Most people come out of comas mind first, then body. She thinks that Jillian is waking up with her body first and her mind will follow. Pretty cool, huh?
Erika
update aug 19th nite time
today Jillian was showing signs of improvement. i spent the day with her, and saw her roll over on her side and hold the side of the bed and pull on it a number of times as well as open her eyes both on command and not on command a bunch of times to! her movements are also getting more delibrate, for instance she scratched the place where there is tape on her face a couple of times. All of these things are so exciting and really beautiful to be there to see.
she was pretty active (meaning moving around a lot) for a part of the day, and her brow looked kind of furrowed a lot of the time, as if she is uncomfortable. All though this is difficult to see, it is also a good sign, because it means that she is registering her body more.
please keep sending her love!!!!!
p.s. the post about the oracle (a couple posts back) was kind of like a private email that accidentally got published.
love,
amber
she was pretty active (meaning moving around a lot) for a part of the day, and her brow looked kind of furrowed a lot of the time, as if she is uncomfortable. All though this is difficult to see, it is also a good sign, because it means that she is registering her body more.
please keep sending her love!!!!!
p.s. the post about the oracle (a couple posts back) was kind of like a private email that accidentally got published.
love,
amber
Tuesday, August 19, 2008
Tuesday 8/19 update. 8:45am
FROM INGRID:
Jillian scored some points with Dr. Kang, which is not easy to do. She opened her right eye at his command while he was on morning rounds. Dr. Kang is no pushover, so the fact that he’s impressed is quite significant.
Jillian had her trach put in yesterday, so now the risk of infection will be significantly reduced. Having the ventilator through her mouth, exposing her airway to bacteria, presented this risk.
Jillian’s infections seem to be under control.
(via Yve Laris Cohen)
Jillian scored some points with Dr. Kang, which is not easy to do. She opened her right eye at his command while he was on morning rounds. Dr. Kang is no pushover, so the fact that he’s impressed is quite significant.
Jillian had her trach put in yesterday, so now the risk of infection will be significantly reduced. Having the ventilator through her mouth, exposing her airway to bacteria, presented this risk.
Jillian’s infections seem to be under control.
(via Yve Laris Cohen)
Monday, August 18, 2008
Monday August 18
Things with Jillian seem a little better today. She's clearly fighting. People say she's looking better every time they come to see her.
She will have few procedures in the next couple days including a tracheostomy, which is scheduled for today.
She was very active last night.
Doctors made their usual rounds this morning and reported that her most recent CAT scan looked great.
We have to give her time and continue to be patient.
She seemed a little more tired this morning during ballet barre and I told her that she is not off the hook. When she wakes up we are resuming class right away.
-Erika Hand w/ Donna Faye
She will have few procedures in the next couple days including a tracheostomy, which is scheduled for today.
She was very active last night.
Doctors made their usual rounds this morning and reported that her most recent CAT scan looked great.
We have to give her time and continue to be patient.
She seemed a little more tired this morning during ballet barre and I told her that she is not off the hook. When she wakes up we are resuming class right away.
-Erika Hand w/ Donna Faye
Ballet Barre- 7pm Sunday
It started when Christy and I asked Jillian to do a Graham contraction, which she responded to. Then I walked Christy through how to do a contraction and we practiced at the foot of Jillian's bed. One thing led to another and the next thing you know we were playing one of Christy's favorite classical pieces on her iPhone and I was giving Jillian ballet barre.
We started with plies, then tendus, then degages, then ronds de jambes, then frappes, then fondus, then stretch at the barre, then grand battements, then a tendu exercise in the center with pirouettes.
I don't want to draw conclusions that may be false and give people information as if it is fact but my experience and my feelings told me that Jillian heard every word I said and was really excited to dance.
Donna Faye switched places with Christy and helped encourage Jillian to keep moving. I would say plie 1 & 2, lengthen 3 & 4 and she really did bend her knees. I said find your rotation and I swear she turned her legs out. We talked about port de bras a lot and she did raise her right arm above her head many times. I asked her to feel the stretch of her psoas and she reached her hand in the direction of her psoas. There was a lot going on and Donna Faye grabbed the nurses on duty who came and observed. One of them said to Jillian, "Now do that tomorrow when the Dr. comes by!"
So, I am going to the hospital at 7:30 am at Ingrid's invitation to give Jillian Day 2 of Ballet barre for the Doctors to see. Ingrid has been saying all along that she thinks Jillian needs to have ballet class. So, here we go. I think what's important is that we do it every day.
Also she opened her mouth really wide in a way that looked like a yawn during the dancing. She also coughed.
Her heart rate went way up during our ballet barre. It only went down once, but everyone needs a little rest.
More to come,
Erika Hand
We started with plies, then tendus, then degages, then ronds de jambes, then frappes, then fondus, then stretch at the barre, then grand battements, then a tendu exercise in the center with pirouettes.
I don't want to draw conclusions that may be false and give people information as if it is fact but my experience and my feelings told me that Jillian heard every word I said and was really excited to dance.
Donna Faye switched places with Christy and helped encourage Jillian to keep moving. I would say plie 1 & 2, lengthen 3 & 4 and she really did bend her knees. I said find your rotation and I swear she turned her legs out. We talked about port de bras a lot and she did raise her right arm above her head many times. I asked her to feel the stretch of her psoas and she reached her hand in the direction of her psoas. There was a lot going on and Donna Faye grabbed the nurses on duty who came and observed. One of them said to Jillian, "Now do that tomorrow when the Dr. comes by!"
So, I am going to the hospital at 7:30 am at Ingrid's invitation to give Jillian Day 2 of Ballet barre for the Doctors to see. Ingrid has been saying all along that she thinks Jillian needs to have ballet class. So, here we go. I think what's important is that we do it every day.
Also she opened her mouth really wide in a way that looked like a yawn during the dancing. She also coughed.
Her heart rate went way up during our ballet barre. It only went down once, but everyone needs a little rest.
More to come,
Erika Hand
Sunday, August 17, 2008
From Amber
There will be 5 pujas prayer ceremonies (rituals) at a Tibetan Buddhist nunnery called Nagi Gompa which is located in the Shivapuri National Forest just above Katmandu in Nepal. The pujas were suggested by Phakchok Rinpoche (sp? A Tibetan Llama) “Mo” (divination) to determine which pujas would be best for Jillian. More information to come.
From Ingrid + Raymond
Prayers are being offered by the church group of the kind costumer service representative at Verizon Wireless.
The Brotherhood of Christian Woodsmen is praying for her.
The Brotherhood of Christian Woodsmen is praying for her.
Sunday August 17
12:30 am Dr. Gupta tells us that Jillian has a urinary tract infection (UTI) and also bacteria in her phlegm. She also has a fever of 100 (she had a fever last night also). They are giving her Tylenol and broad spectrum antibiotics to treat theses things.
I've noticed that today she's started breathing really fast and her heart rate goes up and her face turns kind of red. This has been happening throughout the day.
Dr. Chang says quicker breathing and elevated heart rate are responses to discomfort because she's had no sedation for about 2 days.
Sunday Morning Dr. Kang says that Jillian seems slightly more responsive but is not consistent yet. It's nice to have them validate what we've been thinking, that she feels more present.
Breathing tube will be changed tomorrow for a tracheotomy.
10am Jillian's fever is 100.7 after taking Tyllenol. They are giving her a water pill to bring the liquid down from her lungs into her urine and will give her water pills all day. They are hoping she urinates a lot.
The current feeding tube is beeing switched tomorrow for a PEG tube which will be inserted in her side.
Also switching catheter tomorrow for another kind of catheter that will be more comfortable for her.
***This information was scribed by a combination of Amber and Zari (sp?) and blogged by a combination of Christy and Erika. Bare with us as we are trying to get the information out as fast as possible and there is no wireless internet access in the ICU waiting room and neighboring parts of the hospital.
I've noticed that today she's started breathing really fast and her heart rate goes up and her face turns kind of red. This has been happening throughout the day.
Dr. Chang says quicker breathing and elevated heart rate are responses to discomfort because she's had no sedation for about 2 days.
Sunday Morning Dr. Kang says that Jillian seems slightly more responsive but is not consistent yet. It's nice to have them validate what we've been thinking, that she feels more present.
Breathing tube will be changed tomorrow for a tracheotomy.
10am Jillian's fever is 100.7 after taking Tyllenol. They are giving her a water pill to bring the liquid down from her lungs into her urine and will give her water pills all day. They are hoping she urinates a lot.
The current feeding tube is beeing switched tomorrow for a PEG tube which will be inserted in her side.
Also switching catheter tomorrow for another kind of catheter that will be more comfortable for her.
***This information was scribed by a combination of Amber and Zari (sp?) and blogged by a combination of Christy and Erika. Bare with us as we are trying to get the information out as fast as possible and there is no wireless internet access in the ICU waiting room and neighboring parts of the hospital.
Saturday, August 16, 2008
Quiet Hours and Flowers
INFORMATION FOR JILLIAN'S VISITORS:
Ingrid requests that from
10pm-8:30am
all visitors observe "Quiet Hours" while in Jillian's room. During these hours Jillian can get that much needed rest and calm.
Let's make an effort to direct medical questions and concerns to Jillian's family first rather than approaching doctors and nurses on our own.
Nurses have mentioned that technically no flowers are allowed in the ICU b/c they attract bugs. While we enjoy the flowers that have already been sent please hold off on sending anymore as we cannot accept them.
-Ingrid, Donna Faye, Christy, Erika
Ingrid requests that from
10pm-8:30am
all visitors observe "Quiet Hours" while in Jillian's room. During these hours Jillian can get that much needed rest and calm.
Let's make an effort to direct medical questions and concerns to Jillian's family first rather than approaching doctors and nurses on our own.
Nurses have mentioned that technically no flowers are allowed in the ICU b/c they attract bugs. While we enjoy the flowers that have already been sent please hold off on sending anymore as we cannot accept them.
-Ingrid, Donna Faye, Christy, Erika
Early Saturday 8/16 Morning Update
After watching Jillian all night, Donna Faye and I have a strong sense of when Jillian is "asleep" and "awake," and it seems to be connected to her heart rate. That is, her heart rate seems to be a good indicator of when we should talk to her and try to wake her up versus lay off and let her rest.
Heart rate in 60s and low to mid-70s seems to mean Jillian is "sleeping."
Heart rate in high 70s, 80s, and 90s seems to mean Jillian is "awake."
Jillian will often go between these states in short, short cycles. One or two minutes, for example. Sometimes they're longer--and not always balanced evenly (i.e. she doesn't always "sleep" for as long as she's been "awake" and vice versa).
All this, of course, must be confirmed by doctors. This update is purely a product of strong intuitive reasoning.
Also, naturally, there are marked differences in Jillian's physicality in these two states. Jillian will often engage the muscles in her lower arms and hands as if she is pulling reins (along with minimal leg movement) when she is "sleeping;" the mere presence of movement does not necessarily mean she is "awake."
Jillian also seems to be moving her head more frequently than she did Friday afternoon/evening. Again, this mostly occurs when her heart rate is in the high 70s, 80s, or 90s.
-----
As of 7:15am, no new updates from doctors or nurses.
-----
And now for a lighthearted story from the middle of the night:
At a little after 2am two nurses came in to take Jillian's routine (3 times per day) chest x-ray. I was puzzled to see one of the technicians washing his face after the procedure. "She spit in my eye!" he said. "I've been doing this for three years and never once has this happened." Apparently Jillian sent some projectile saliva onto his cheekbone and eye. "I guess she doesn't like me," the nurse joked.
-Yve Laris Cohen
Heart rate in 60s and low to mid-70s seems to mean Jillian is "sleeping."
Heart rate in high 70s, 80s, and 90s seems to mean Jillian is "awake."
Jillian will often go between these states in short, short cycles. One or two minutes, for example. Sometimes they're longer--and not always balanced evenly (i.e. she doesn't always "sleep" for as long as she's been "awake" and vice versa).
All this, of course, must be confirmed by doctors. This update is purely a product of strong intuitive reasoning.
Also, naturally, there are marked differences in Jillian's physicality in these two states. Jillian will often engage the muscles in her lower arms and hands as if she is pulling reins (along with minimal leg movement) when she is "sleeping;" the mere presence of movement does not necessarily mean she is "awake."
Jillian also seems to be moving her head more frequently than she did Friday afternoon/evening. Again, this mostly occurs when her heart rate is in the high 70s, 80s, or 90s.
-----
As of 7:15am, no new updates from doctors or nurses.
-----
And now for a lighthearted story from the middle of the night:
At a little after 2am two nurses came in to take Jillian's routine (3 times per day) chest x-ray. I was puzzled to see one of the technicians washing his face after the procedure. "She spit in my eye!" he said. "I've been doing this for three years and never once has this happened." Apparently Jillian sent some projectile saliva onto his cheekbone and eye. "I guess she doesn't like me," the nurse joked.
-Yve Laris Cohen
Friday, August 15, 2008
Friday Number Four
The afternoon is young but it's already been pretty exciting (12:50pm). Jillian isn't sedated at all anymore. Lauryn played her George Harrison's, 'I've Got My Mind Set On You' and Jillian got to really moving around, stretching her arms all the way over her head, twisting her body and legs around. She bopped Lauryn on the head twice with her mitt pretty hard. And most importantly she was closing her fingers lightly around different people's hands when we told her to squeeze our hands.
Other news is that she is not digesting the feeding tube food very well and she'll have to get a peg put into her stomach to insert food directly.
She has felt really present today, more so than any day and we've all been really excited.
This has been the best moment so far aside from being told that she was going to live.
-via Amber
Other news is that she is not digesting the feeding tube food very well and she'll have to get a peg put into her stomach to insert food directly.
She has felt really present today, more so than any day and we've all been really excited.
This has been the best moment so far aside from being told that she was going to live.
-via Amber
Friday Morning 3-Encouraging
The following information is coming from friends who are in the room with Jillian. Not from doctors. Sara Marcus wanted me to say that so that we aren't getting too excited about information that we can't substantiate.
Moving around a ton.
Moving around in ways that the motions seem stronger than it has been.
Playing George Harrison song "I've Got my Mind Set on You" &
Jillian responds by opening her arms above her head. Circling her arms too.
Can close her finger around your hands when asked to "squeezed my hand." Not a strong squeeze but definitely a response.
Moments where she's "sleeping" and times when she's moving around. Sometimes it seems like she doesn't have enough energy to sustain the movement.
Very encouraging 15 minute period of her being super active.
Obviously she is moving around more now off sedation.
Seems to Sara Marcus that she's trying to figure out how to respond to stimulus.
Nurses are saying "Yeah she hears you. Tell her it's time to wake up. She's had 4 days of rest, encourage her to wake up."
No question that she hears you.
Lauryn says:
Jillian's moving around when we play music.
Eyes not focusing on anything.
Things are improving.
Needs to gather strength.
Appears to be able to hear.
Feels like she's stuck in mud and trying to find her way out.
Not able to respond to commands. Still waiting for her to do this. Might take 3-4 more days?
Lauryn is leaving the hospital now to go to an internet cafe and write a more detailed post.
-Erika
Moving around a ton.
Moving around in ways that the motions seem stronger than it has been.
Playing George Harrison song "I've Got my Mind Set on You" &
Jillian responds by opening her arms above her head. Circling her arms too.
Can close her finger around your hands when asked to "squeezed my hand." Not a strong squeeze but definitely a response.
Moments where she's "sleeping" and times when she's moving around. Sometimes it seems like she doesn't have enough energy to sustain the movement.
Very encouraging 15 minute period of her being super active.
Obviously she is moving around more now off sedation.
Seems to Sara Marcus that she's trying to figure out how to respond to stimulus.
Nurses are saying "Yeah she hears you. Tell her it's time to wake up. She's had 4 days of rest, encourage her to wake up."
No question that she hears you.
Lauryn says:
Jillian's moving around when we play music.
Eyes not focusing on anything.
Things are improving.
Needs to gather strength.
Appears to be able to hear.
Feels like she's stuck in mud and trying to find her way out.
Not able to respond to commands. Still waiting for her to do this. Might take 3-4 more days?
Lauryn is leaving the hospital now to go to an internet cafe and write a more detailed post.
-Erika
Friday Morning 2
Jillian is 100% off sedation for right now. She's moving her limbs a lot more.
Sometimes she opens her "good" eye (right eye) a quarter of the way but she's not tracking motion.
Her eyes sweep from side to side like a search light but they don't tack onto anything.
Until she's tracking motion it's hard to tell if her brain is making sense of what she's seeing.
The optimologist came by. The intraocular pressure of her "bad" eye (left eye) is at a good level. Surgery has succesfully relieved the elevated intraocular pressure from the hematoma behind the left eye. The pressure around her left eye is almost as low as the pressure around her right eye.
Won't know until she wakes up what kind of damage, if any, has been done to her left eye.
Keep standing-by. Even more information to come shortly.
Sometimes she opens her "good" eye (right eye) a quarter of the way but she's not tracking motion.
Her eyes sweep from side to side like a search light but they don't tack onto anything.
Until she's tracking motion it's hard to tell if her brain is making sense of what she's seeing.
The optimologist came by. The intraocular pressure of her "bad" eye (left eye) is at a good level. Surgery has succesfully relieved the elevated intraocular pressure from the hematoma behind the left eye. The pressure around her left eye is almost as low as the pressure around her right eye.
Won't know until she wakes up what kind of damage, if any, has been done to her left eye.
Keep standing-by. Even more information to come shortly.
Friday Morning
Jillian was taken off sedation this morning and didn't respond to commands.
Her brain is firing and her limbs are moving.
Doctors are trying to lower the sedation in general.
The cell phone reception in the ICU waiting room is spotty. We are trying to get more details now.
Stand-by.
Her brain is firing and her limbs are moving.
Doctors are trying to lower the sedation in general.
The cell phone reception in the ICU waiting room is spotty. We are trying to get more details now.
Stand-by.
Thursday, August 14, 2008
Medical Timeline Mon 11-Thur14
MEDICAL TIMELINE:
Monday, August 11
~11:20 AM Jillian is hit by a car at the corner of Myrtle and Marcy Avenues in Bed-Stuy, Brooklyn and is rushed to the hospital. The detective will later report that she was semiconscious at the scene. (Can we confirm this? Does it matter?)
11:50 AM JP is checked in to Bellevue Hospital.
1:20 PM JP goes in to surgery to remove lemon-sized epidural hematoma on the left side of her brain and smaller hematoma by her left eye.
~4:40 PM JP is moved to the recovery room.
~7 PM: JP is moved to the neuro ICU. Her intracranial pressure (ICP) elevates to the mid-twenties, and a CAT scan shows another hematoma and additional bleeding.
~11 PM or midnight: JP returns to surgery to remove the bleeding and second hematoma.
~2 AM: JP returns from surgery. Her mid-cranial pressure drops to 8. She is given a coagulation aid to help her blood clot.
Dr. Kang reports that while the surgery has removed the clots, there are many bruises on her brain, contusions on the right side. The rest of her brain looks ok, although more bruises could show up later. Her skull had been fractured in the accident, which sounds obvious but hadn’t been stated outright yet. Diffuse axonal injury is still a possibility, but no devastating deep-in-brain-tissue injury is visible. Dr. Kang reports that there are no signs yet of severe neurological damage (things like pupils, gag reflex, and posture). He explains, “In some cases, we’re fighting just to keep the person alive. That’s not the case here; it’s not a salvage operation. We’re trying to maximize neurological function.”
Tuesday, August 12
around 6 AM JP goes for a CAT scan to check on the post-surgery state of her brain.
8:10 AM JP returns from CT. Doctors report that the scan looks really good. Bleeding looks good. No more operations foreseen.
8:45 AM Frangos, Stapleton, and three other docs go in with a half dozen nurses. They tell her, “Wiggle your feet.” Stapleton asks, “Why isn’t she in a Miami J?” (a soft cervical collar as opposed to the rigid one she’s in), expresses concern about her eye and asks that ophthamologists be called in to check it out.
2 PM Briefing with the doctors. Dr. Kang says she’s stable but “not out of the woods yet.” Doing really well neurologically; all her vitals are good. Being monitored in the ICU for things like electrolytes and blood pressure (sedation makes her blood pressure go down, so this has to be monitored in order to make sure it doesn’t go down too far). Some things that might happen to her in terms of effects on her brain: The hematoma was near the language section of her brain, so language stuff might be difficult for her—she might mix up words for a while. Short-term memory might be affected. She might have some dizziness for the next year. The right side of her body might be weaker for a while. He says basically it’s a matter of time and we have to wait and see what happens.
2:45 PM Marissa, a witness, comes with her son Mahleek and tells their story: They were stopped at a light on Myrtle at Marcy—heading west, it seems necessary to me—and from what I can tell, JP was waiting at the SE corner when the driver came up heading north on Marcy, a one-way street, to turn right (east) onto Myrtle. He swerved to avoid hitting Marissa’s car and hit Jillian. Marissa states that JP was not talking on her cell phone.
Afternoon—JP is changed into a soft cervical collar. Two ophthamologists come to check out her eye and say it looks OK.
Evening—JP’s ICP fluctuates between 13 and 28, occasionally dipping above 30. The nurses say these fluctuations are normal. An orthopedic team comes to check out JP’s right ankle, which had looked abnormal but that could just be because she’s a dancer. X-rays at some point today show that her ankle is fine and there are no broken bones in her legs or feet.
Around midnight: JP’s ICP is up around 30 for twenty minutes. Amber asks nurses and a doctor whether this is OK, and why it should be OK now when the same ICP the previous evening meant additional surgery was required. A physician finally says, “Fine, I’ll order a CAT scan.” She goes for the CAT scan, which comes back normal. The next day the nurse explains that the elevated ICP is now not due to any more clotting in her brain, only due to anxiety or disturbance in her brain.
Wednesday, August 13
around 8 AM JP is removed from sedation, kicks her feet and moves her arms.
around 9 AM Frangos, Stableford, and the rest of the team come by on their rounds. JP does not respond to commands. Dr. Gupta explains that when people don’t respond to commands, they aren’t ready to be extubated (have their breathing tubes removed) because they can’t be depended upon to clear their throat, cough, etc. And as long as a person has a breathing tube, they need to stay sedated because the breathing (and feeding) tubes are very uncomfortable and may trigger a gag reflex. JP goes back on sedation.
1 PM Jeremy and Raymond go to the 79th Precinct and to the accident scene. Jeremy picked up a copy of the initial accident report at the precinct. Christy Raymond, and Jeremy visited the scene of the accident. Christy took pictures from various perspectives.
~2:45 PM JP goes down for an angiogram to check on whether there’s a blockage in her carotid artery, the big artery that runs up the side of the neck bringing oxygenated blood to the head and neck.
~4 PM Update from doctors: Everything in her brain looks really good. The bruises on her brain have already peaked and are beginning to heal—this is occurring earlier than the average of three–four days. Docs will remove sedation again Thursday AM to check command following, etc., and are hopeful that they will be able to remove breathing tube sometime Thursday or Friday. After they take out the tubes and pressure monitor they will do an MRI which will give more information about the long-term prognosis, but until then the only available information about neuro functioning comes from things like the commands that are being given.
~5:30 PM Christy and Jeremy took pictures of Jillian in her bed.
Dr. Elliott will be on all night. Dr. Elliott showed images from the CT scans and the CTA (CT Angiogram) which show no further clotting. The CT showed the skull fracture, which extends from the outer corner of her left eye deep into her head right next to the carotid artery, which is why the doctors were concerned that the fracture might have disturbed the carotid artery. Very, very slight midline shift to the right.
Thursday, August 14
8 AM Doctors remove sedation and Jillian coughs, so they resume sedation for a while. When they remove it again a few minutes later, she is still unresponsive to commands. The doctors reiterate that this is not a cause for concern; her brain has been through a lot and still needs to heal before it’s ready to regain consciousness.
On another CT scan later this morning, everything looks fine.
3 PM Doctors removed the monitor off the top of her head that was the main data source of her intracranial pressure (ICP). The main reason for this is because her CAT scans have been consistently coming back "clean." Jillian’s mom Ingrid affectionately called the monitor a “top-knot” or “a Martian fashion statement.” Those who have seen Jillian can tell you that it looked like a looped tube sitting on the top of her head.
Doctors also removed one of the drains that was on the left side of her head.
She is being gradually, bit by bit, taken off of the sedative.
She is probably not coming off the respirator until Monday.
Doctors continue to hold the perspective that it is still very early in her process to expect more than what we’re already getting from her.
-Erika Hand and Sara Marcus
Monday, August 11
~11:20 AM Jillian is hit by a car at the corner of Myrtle and Marcy Avenues in Bed-Stuy, Brooklyn and is rushed to the hospital. The detective will later report that she was semiconscious at the scene. (Can we confirm this? Does it matter?)
11:50 AM JP is checked in to Bellevue Hospital.
1:20 PM JP goes in to surgery to remove lemon-sized epidural hematoma on the left side of her brain and smaller hematoma by her left eye.
~4:40 PM JP is moved to the recovery room.
~7 PM: JP is moved to the neuro ICU. Her intracranial pressure (ICP) elevates to the mid-twenties, and a CAT scan shows another hematoma and additional bleeding.
~11 PM or midnight: JP returns to surgery to remove the bleeding and second hematoma.
~2 AM: JP returns from surgery. Her mid-cranial pressure drops to 8. She is given a coagulation aid to help her blood clot.
Dr. Kang reports that while the surgery has removed the clots, there are many bruises on her brain, contusions on the right side. The rest of her brain looks ok, although more bruises could show up later. Her skull had been fractured in the accident, which sounds obvious but hadn’t been stated outright yet. Diffuse axonal injury is still a possibility, but no devastating deep-in-brain-tissue injury is visible. Dr. Kang reports that there are no signs yet of severe neurological damage (things like pupils, gag reflex, and posture). He explains, “In some cases, we’re fighting just to keep the person alive. That’s not the case here; it’s not a salvage operation. We’re trying to maximize neurological function.”
Tuesday, August 12
around 6 AM JP goes for a CAT scan to check on the post-surgery state of her brain.
8:10 AM JP returns from CT. Doctors report that the scan looks really good. Bleeding looks good. No more operations foreseen.
8:45 AM Frangos, Stapleton, and three other docs go in with a half dozen nurses. They tell her, “Wiggle your feet.” Stapleton asks, “Why isn’t she in a Miami J?” (a soft cervical collar as opposed to the rigid one she’s in), expresses concern about her eye and asks that ophthamologists be called in to check it out.
2 PM Briefing with the doctors. Dr. Kang says she’s stable but “not out of the woods yet.” Doing really well neurologically; all her vitals are good. Being monitored in the ICU for things like electrolytes and blood pressure (sedation makes her blood pressure go down, so this has to be monitored in order to make sure it doesn’t go down too far). Some things that might happen to her in terms of effects on her brain: The hematoma was near the language section of her brain, so language stuff might be difficult for her—she might mix up words for a while. Short-term memory might be affected. She might have some dizziness for the next year. The right side of her body might be weaker for a while. He says basically it’s a matter of time and we have to wait and see what happens.
2:45 PM Marissa, a witness, comes with her son Mahleek and tells their story: They were stopped at a light on Myrtle at Marcy—heading west, it seems necessary to me—and from what I can tell, JP was waiting at the SE corner when the driver came up heading north on Marcy, a one-way street, to turn right (east) onto Myrtle. He swerved to avoid hitting Marissa’s car and hit Jillian. Marissa states that JP was not talking on her cell phone.
Afternoon—JP is changed into a soft cervical collar. Two ophthamologists come to check out her eye and say it looks OK.
Evening—JP’s ICP fluctuates between 13 and 28, occasionally dipping above 30. The nurses say these fluctuations are normal. An orthopedic team comes to check out JP’s right ankle, which had looked abnormal but that could just be because she’s a dancer. X-rays at some point today show that her ankle is fine and there are no broken bones in her legs or feet.
Around midnight: JP’s ICP is up around 30 for twenty minutes. Amber asks nurses and a doctor whether this is OK, and why it should be OK now when the same ICP the previous evening meant additional surgery was required. A physician finally says, “Fine, I’ll order a CAT scan.” She goes for the CAT scan, which comes back normal. The next day the nurse explains that the elevated ICP is now not due to any more clotting in her brain, only due to anxiety or disturbance in her brain.
Wednesday, August 13
around 8 AM JP is removed from sedation, kicks her feet and moves her arms.
around 9 AM Frangos, Stableford, and the rest of the team come by on their rounds. JP does not respond to commands. Dr. Gupta explains that when people don’t respond to commands, they aren’t ready to be extubated (have their breathing tubes removed) because they can’t be depended upon to clear their throat, cough, etc. And as long as a person has a breathing tube, they need to stay sedated because the breathing (and feeding) tubes are very uncomfortable and may trigger a gag reflex. JP goes back on sedation.
1 PM Jeremy and Raymond go to the 79th Precinct and to the accident scene. Jeremy picked up a copy of the initial accident report at the precinct. Christy Raymond, and Jeremy visited the scene of the accident. Christy took pictures from various perspectives.
~2:45 PM JP goes down for an angiogram to check on whether there’s a blockage in her carotid artery, the big artery that runs up the side of the neck bringing oxygenated blood to the head and neck.
~4 PM Update from doctors: Everything in her brain looks really good. The bruises on her brain have already peaked and are beginning to heal—this is occurring earlier than the average of three–four days. Docs will remove sedation again Thursday AM to check command following, etc., and are hopeful that they will be able to remove breathing tube sometime Thursday or Friday. After they take out the tubes and pressure monitor they will do an MRI which will give more information about the long-term prognosis, but until then the only available information about neuro functioning comes from things like the commands that are being given.
~5:30 PM Christy and Jeremy took pictures of Jillian in her bed.
Dr. Elliott will be on all night. Dr. Elliott showed images from the CT scans and the CTA (CT Angiogram) which show no further clotting. The CT showed the skull fracture, which extends from the outer corner of her left eye deep into her head right next to the carotid artery, which is why the doctors were concerned that the fracture might have disturbed the carotid artery. Very, very slight midline shift to the right.
Thursday, August 14
8 AM Doctors remove sedation and Jillian coughs, so they resume sedation for a while. When they remove it again a few minutes later, she is still unresponsive to commands. The doctors reiterate that this is not a cause for concern; her brain has been through a lot and still needs to heal before it’s ready to regain consciousness.
On another CT scan later this morning, everything looks fine.
3 PM Doctors removed the monitor off the top of her head that was the main data source of her intracranial pressure (ICP). The main reason for this is because her CAT scans have been consistently coming back "clean." Jillian’s mom Ingrid affectionately called the monitor a “top-knot” or “a Martian fashion statement.” Those who have seen Jillian can tell you that it looked like a looped tube sitting on the top of her head.
Doctors also removed one of the drains that was on the left side of her head.
She is being gradually, bit by bit, taken off of the sedative.
She is probably not coming off the respirator until Monday.
Doctors continue to hold the perspective that it is still very early in her process to expect more than what we’re already getting from her.
-Erika Hand and Sara Marcus
Medical Personnel
MEDICAL PERSONNEL
Dr. Spiros Frangos—trauma surgeon. Comes around in the mornings, 8 AM.
Has been working on JP's case since she was admitted.
Dr. Jennifer Stableford—trauma chief resident. Also has been on JP's
case since the beginning. Comes around in the mornings with Frangos.
Dr. Kang—another chief resident.
Dr. Gupta—around during the day. Friendly and encouraging.
Miriam—head nurse during the day. Good-humored and totally on top of things.
Dr. Elliott--Great at explaining. Very forthcoming. Showed the family
the CAT scans.
Dr. Spiros Frangos—trauma surgeon. Comes around in the mornings, 8 AM.
Has been working on JP's case since she was admitted.
Dr. Jennifer Stableford—trauma chief resident. Also has been on JP's
case since the beginning. Comes around in the mornings with Frangos.
Dr. Kang—another chief resident.
Dr. Gupta—around during the day. Friendly and encouraging.
Miriam—head nurse during the day. Good-humored and totally on top of things.
Dr. Elliott--Great at explaining. Very forthcoming. Showed the family
the CAT scans.
Wednesday, August 13, 2008
from Erika Hand
Doctors met with Ingrid, Raymond, Jeremy, and Amber around 4pm today, Wednesday August 13th. The overall report was optimistic.Jillian had an angiogram test which revealed that she has no clotting in her arteries. She is "100% clot-free." This is great news!There is a fracture at the base of her skull that will eventually heal on its own.Jillian is presently in a medically induced coma. They will take her off sedation at approx 8am tomorrow (Thursday morning).At that time she will be asked to follow simple commands (e.g. "Squeeze my hand" or "Hold up 2 fingers")Ingrid and Raymond were very relieved to speak directly to the doctor (Dr. Robin Elliot sp?) and see detailed images the epidural hematoma.The doctor has been very forthcoming with information. Doctor Elliot conducted the first surgery and will also be the doctor on duty tonight.The pressure from the swelling caused a slight mid-line shift of her brain.After Jillian comes off sedation she will be given an MRI test which will reveal more about her cognitive abilities.Bruises on her brain are healing quickly!Jeremy, Raymond, and Christy visited the site of the accident as well as the nearby police precinct.Jeremy is following up in the morning with the officer who wrote the supplemental report of the accident.Marissa Brown was a witness to the whole accident.She helped Jillian at the scene.She has visited the hospital where she met the family.Ingrid wold like to find a way to contact the paramedics who handled Jillian from the scene of the accident to the hospital.Ingrid and Raymond are now resting at the hotel nearby. The family will take turns resting so that there will always be at least one family member on site at the hospital.
Tuesday, August 12, 2008
From Lauryn Siegel
Some of you might know this information, and other might be hearing of it for the first time, but I just wanted to send something out for all --
On Monday morning around 11:20 AM, Jillian was struck by a car while crossing the street near her sublet in Bed-Stuy (she had the right of way) to get to the train on her way to work. Fortunately, several good Samaritans were there to help, and the police came within moments. The driver who hit her remained on the scene. He was driving on a suspended license; he is now in custody and is facing charges.
Jillian was taken by ambulance to Bellevue hospital where she was rushed to the operating room. Here the doctors evacuated a lemon-sized epidermal hematoma from her brain and another blood clot from below her left eye. A CAT scan later Monday night found additional bleeding in her brain and she went back into surgery to have that removed. Since then she has been resting in a medically induced coma and is now in stable condition. The good news is that she is alive -- this easily could have been a fatal accident.
Her family arrived this morning. The doctors at Bellevue have been fantastic. They are also largely young and attractive -- I know that Jillian, as a big fan of Grey's Anatomy, will be pleased when she wakes up.
She is taking some visitors right now and will likely take many more when she gets out of a coma. Many people have expressed interest in sending flowers. She is currently in room 59 of the Neuro Intensive Care Unit at Bellevue (NICU), in Building H on the 10th floor. But depending on what happens with her condition, she could be moved, so please call or check in with me to double check in a few days.
Also, for those of you interested in doing something a little more personal, Jillian is a great lover of crystals large and small. East/West Books, a metaphysical shop on 5th Avenue between 13th and 14th in Manhattan, has a great selection.
Thanks to everyone I have spoken or texted with. And, to everyone else, I know you will keep Jillian in your prayers and thoughts. Whether you met her once for 10 minutes or know her well, she is a bright light in all our lives and I know I am not alone when I say that I'm eager to see her spark out in the world again soon!
Love,
Lauryn
Friends of Jillian
Dear Friends of Jillian,
Jillian's family, Ingrid, Raymond and Jeremy Pena left New Mexico at 6:00 last night and arrived in New York City at 7:00 this morning. They have been by Jillian's side at Bellevue hospital ever since.
The family will need a place to stay in the Manhattan area until Jillian's condition stabilizes. If you or someone you know has an extra room in the city (preferably somewhere near 1st ave and 27th street) and are willing to provide temporary lodging for them, it would be an immense help during this difficult time!
If you can help, you can contact Ariel Ashe at arielashe@gmail.com.
Thank you to everyone for your love and support. We will keep everyone posted on Jillian's recovery.
Jillian's family, Ingrid, Raymond and Jeremy Pena left New Mexico at 6:00 last night and arrived in New York City at 7:00 this morning. They have been by Jillian's side at Bellevue hospital ever since.
The family will need a place to stay in the Manhattan area until Jillian's condition stabilizes. If you or someone you know has an extra room in the city (preferably somewhere near 1st ave and 27th street) and are willing to provide temporary lodging for them, it would be an immense help during this difficult time!
If you can help, you can contact Ariel Ashe at arielashe@gmail.com.
Thank you to everyone for your love and support. We will keep everyone posted on Jillian's recovery.
From the NY Post
http://www.nypost.com/seven/08122008/news/regionalnews/promising_dancer_hit_by_auto_124057.htm
PROMISING DANCER HIT BY AUTO
By JOHN DOYLE and LARRY CELONA
Posted: 3:52 am
August 12, 2008
An accomplished dancer, choreographer and artist was struck and critically injured by an unlicensed driver as she crossed a rain-slicked Brooklyn street yesterday.
Jillian D. Peña, 28 - a doctoral candidate in fine arts in London who got her MA at the Art Institute of Chicago - was in critical condition after getting hit at around 11 a.m. at Myrtle and Marcy avenues in Bedford-Stuyvesant.
Sources said Peña was talking on her cellphone when she was crossing the street.
Her body was slammed against the windshield as the Dodge skidded 75 feet, and she rolled onto the pavement. She was rushed to Bellevue Hospital.
Walter Drumgo, 54, was charged with aggravated unlicensed operation of motor vehicle and driving with a suspended license. He has 11 previous suspensions and has not had a valid license in three years.
Peña's parents, Ingrid and Raymond, of Albuquerque, NM, were en route to New York last night, said neighbor Abe Nickerson.
Peña is a National Merit Scholar who is pursuing a Ph.D. in performance studies, according to her online profile. "Mothership," which she choreographed, was performed at the Dance Theater Workshop last spring.
Writing about her National Hispanic Merit scholarship, she says on a foundation Web site that "although I had always identified myself as Hispanic, this was the first time it had been thrust towards me from the outside as something that set me apart."
"I am a female Hispanic/Scandinavian performance artist, but simultaneously, and more simply, I am an American artist."
Additional reporting by Cathy Burke
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