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
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