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Interview With Shireen Jeejeebhoy, Author of "Lifeliner – The Judy Taylor Story"
Today, Tyler R. Tichelaar of Reader Views is pleased to be joined by Shireen Jeejeebhoy, who is here to talk about her new novel “Lifeliner: The Judy Taylor Story,” iUniverse (2007), ISBN 9780595445448.
Shireen Jeejeebhoy was born in London and spent her formative years in India. In 1968, she arrived in Canada where she attended local public schools before attending the University of Toronto, earning a degree in psychology. She has also been deeply interested in medicine, her father Dr. Jeejeebhoy being the doctor who treated Judy Taylor. Her new book “Lifeliner” is about his work helping Judy. Shireen personally knew Judy and is the perfect person to tell the story of Judy and her father’s relationship trying to solve Judy’s digestive problems using Total Parental Nutrition. Shireen is an accomplished writer with many articles to her credit. “Lifeliner” is her first published book.
Tyler: Welcome, Shireen. I understand this book shows your father’s role as the doctor to Judy Taylor. Will you begin by telling us about your father and his own medical background?
Shireen: It’s wonderful to be here, Tyler. Thank you. My father was born in Burma and fled to India with his family during WWII. His grandmother, who trained as a medical doctor, inspired him, and he decided to study medicine. He was accepted into medical school at a very young age, too young to enter right away, and so he studied economics at university for a couple of years before attending Christian Medical College in Vellore, India. His training there included comprehensive studies in anatomy and physiology, which translated into him understanding the whole human body even though his specialty is in gastroenterology. This knowledge has given him a leg up on most specialists who know their one area well but not the rest of the human body; since our organs do not function independently of each other, it means he can take into account how a patient’s intestinal problems affect their liver or their heart or even their psychological functioning or vice versa.
His training also included treating patients in the community around Vellore, not just seeing them in the sterile environment of a hospital. He saw how a person’s lifestyle impacted his or her health. For example, the College is located in the south of India where the diet is vegetarian. However, in one region, there were many widows, whereas in another both men and women lived long and well. It turned out that the difference between the two regions boiled down to the fact that the area where men died young used coconut oil in their cooking; the other did not. From noticing that one fact, Dr. Jeejeebhoy’s mentors were able to research why coconut oil had a deleterious effect on a person’s heart, and he learnt how valuable what one sees in the field is to research progress. As a result, when he became a consultant, he drew from his clinical practice when coming up with grant ideas and research projects; he continued the legacy of observing trends in his patients and then looking into it. In 40 years, he didn’t have one grant rejected. His research also included basic science.
After graduating First Class from Medical College, he went to London, England, for residency and earned his Ph.D. in albumin metabolism at London University in record time. Already by that point in his training, he was interested in the basic science of nutrition and gastroenterological disease. He had always wanted to work in India, and with his wife and new baby (me), he moved to Bombay. He quickly became known for his ground-breaking research in areas such as lactose intolerance, and he started travelling the world on speaking engagements. But he found the conditions in India stifling; when he was offered a job in Toronto, he jumped at it. He passed his licensing and Specialist exams and drove to Sioux Lookout, Ontario to see patients in remote areas within months of starting as a gastroenterologist on staff at Toronto General Hospital and hasn’t looked back.
Tyler: Would you tell us more about Judy Taylor’s illness and the remedy that was created for it?
Shireen: Judy was a healthy young woman when she developed severe stomach pains. She put off going to the doctor and put off going to the doctor until she finally could not stand up for the agony. She had emergency surgery, and they discovered a small amount of her bowel had died. They didn’t know what had caused the necrosis, but felt that they had solved her problem. A week later, her pain became worse, and again they operated on her. This time the surgeons had to remove all of her intestines, leaving her with no way to digest food. Facing starvation, she begged her surgeons to help her live; fortunately, they learnt of the research Dr. Jeejeebhoy was doing on artificial feeding and sent her to him.
When she arrived on his ward, Dr. Jeejeebhoy, working with the hospital pharmacist, had to come up with a nutritionally complete solution that could be infused into her veins as she could no longer digest food. Basically, he had to find an alternative to her intestines. They had to consider protein, carbohydrate, fat, vitamin, and trace mineral requirements. His surgical colleague had to invent a permanent entranceway into her large vein in the chest that feeds into the heart. They had to figure out how to feed her this solution over 12 hours instead of 24, and then they had to figure out how she could manage this at home all on her own, far away from the hospital and the doctors. But before all that, they had to cure the rampant infection in her abdomen, for, you see, the rumps of her bowels were leaking and causing a mess inside her; they also had to ensure all her stomach juices went out of her body, instead of leaking inside it, and into a leg bag that masked any odours. Curing the infection was relatively easy; the Gastrostomy tube that went from her stomach into a leg bag never did work quite right, and they hoped for the best with this new alimentation, or TPN as it later came to be called, but when they sent her home on it, none of them knew how long she would live or what her quality of life would be like. As far as Judy was concerned though, life itself was good enough, and anyway she had no intention of lying on a couch all day. She had things to do. Dr. Jeejeebhoy had given her a second chance, and she was running with it.
Tyler: What was her quality of life for the twenty-one years she lived with the TPN? What did she do rather than lie around on the couch all day?
Shireen: After prolonged hospitalization, it usually takes one month to recover for every month in hospital. But once Judy started to get her legs under her again, the first thing she did was learn to drive. She needed to enroll her daughters in such programs as 4-H. To get them to their extracurricular activities, she needed to know how to drive. She was not a swift driver, but when she set her mind on doing something, she was going to do it.
Aside from some nutritional deficiencies in the early years that Dr. Jeejeebhoy cleared up, Judy was active, vital, and gave no hint to her neighbours and friends of having been very ill and being dependent on medical technology. Sure, she didn’t hide the fact that she didn’t eat at church dinners; instead, she would joke about it and be the first to volunteer to bring something. Most people found out about her being on TPN through the grapevine.
In addition to looking after her family, which she considered her core role, she volunteered in her community and in the hospital helping new patients adjust to TPN. She took an active role in a patient group in Toronto, travelled to the U.S. for Oley Foundation conferences, and to Sweden to talk about what it was like being on TPN and to meet the eager European press.
She boated with Cliff along the waterways in Ontario, went on road trips, and, of course, hosted her famous annual barbecues for her doctors and nurses and fellow lifeliners.
Unfortunately, the last few years of her life were not as healthy as the first: the price of being the guinea pig for TPN. And so she had to scale back her activities. However, she continued to help people in whatever capacity she could right to the end. For Judy, it was all worth it.
Tyler: How exactly does Total Parental Nutrition (TPN) work to feed someone?
Shireen: The usual method is that a surgeon implants a large catheter, referred to as a central catheter, into the veins in the neck and chest. One tip is threaded down until it is at the edge of the atrium of the heart. In that spot, the blood volume is high and fast enough to prevent clots from forming and blocking that end of the catheter. The other end is threaded out of the vein, under the skin, and finally emerges low enough down the chest for the patient to be able to see it.
The pharmacy provides a nutritionally complete solution, containing proteins, carbohydrates, electrolytes, and minerals to the patient. They also supply a fat solution in separate bags, and vitamins (and medications if necessary) in vials. The patient follows a prescribed routine to inject the vitamins into the protein-carbohydrate solution. They infuse this solution every night for about 10 to 12 hours a night into their central catheter. Following pharmacy instructions, they will also infuse the fat solution prior to the regular one on some nights. That will lengthen the feeding time by about a couple of hours. Although Judy never used a pump to push the solution into her catheter, most people do today.
Part of what the patient has to do every night is prepare the solutions and warm them up to room temperature, so that they are not cold going into the body, then connect the line from the solution bags to her own central catheter. They sleep during most of the feeding time. During the day, they must keep the catheter clear with a heparin block when the TPN is not connected up, and the skin around it clean. It took Judy only 15 minutes to do all this! Patients in other countries may have a different way of doing it, but the method devised by Dr. Jeejeebhoy is safe and allows the patient the most freedom and functionality in their daily lives. None of his patients have been invalids because of having to go on TPN. They run businesses, practice a profession, raise children, etc., and they always feel healthier as a result of going on it. For most, it means a brand new life, just like for Judy.
Tyler: How did your father, Dr. Jeejeebhoy, arrive at the idea for Total Parental Nutrition?
Shireen: The Europeans had been studying this idea for decades. Prof. Arvid Wretlind talks about this very topic in his Foreword to “Lifeliner” far better than I can. My father came into it after he settled down in Toronto, Canada. The patients sent his way were so sick, they were sometimes terminal. Since he wasn’t interested in all his patients dying on him, he looked into alternative ways of feeding them. A well-nourished body can fight disease and infection better than a starved or malnourished one.
Ever since I can remember, my father Dr. Jeejeebhoy has always had stacks of journals and photocopied articles piled on his desk. He reads slower than my mother, but he reads widely and extensively, not just limiting himself to human studies, but also animal studies and articles outside his field of specialty. From this continual feeding of his curiosity and from his drive to discover better ways to help his patients, he would have heard of what the Europeans and Americans were doing in the development of alimentation, as it was then called. He would have thought about what his patients were facing and looked for solutions in either his own basic science research in his laboratory at the University of Toronto or in the stack of medical journals. He would have asked himself if his patients’ stomachs and bowels couldn’t do the job of nourishing them, then perhaps feeding vitamins and minerals and carbohydrates and proteins directly into their bloodstream would.
He started working on this idea with his surgical colleague soon after he arrived in Toronto. His colleague wanted to nourish his post-operative patients in the short term while they recovered from their operations. That would speed their healing. Dr. Jeejeebhoy worked on doing just that. In those days, people took much longer to recover, and hospitals kept patients in much longer than they do now. Dr. Jeejeebhoy was basically still at this stage when Judy came into his care.
Tyler: I understand your father worked with Judy for twenty years through trial and error. Will you tell us a little about the process and the changes he made to TPN along the way?
Shireen:”Lifeliner” tells the big stories of the evolution of TPN from the time Judy first went on it until 1991 and of some of the nutritional discoveries made because of Judy’s experience, discoveries that would alter the composition of the TPN solutions. But in a nutshell, the process went like this: Judy would walk into Dr. Jeejeebhoy’s office and say, “Jeej, I have a problem. Fix it.” He’d say, “OK. What’s the problem?” She’d tell him, he’d send her for tests, sometimes he’d send her bloodwork to the U.S. for analysis as Canada didn’t have the facilities, sometimes he’d conduct tests most people haven’t heard of, and finally he would call her back into his office and say, “I don’t know exactly what the problem is. I’ll need to research it more and get back to you.” She would go home, joke to her friends and family about walking on pins and needles, and wait for his call back. In the meantime, she lived life to its fullest and not worried about whatever was ailing her (because of a nutritional deficiency). Jeej was looking after things, as far as she and her husband Cliff were concerned.
Eventually, Jeej would have an Ah-ha moment and ask Judy to come into the hospital where he wanted to try something out. Judy would tell Cliff, “Jeej wants me to be a guinea pig again.” Usually, Jeej’s hunch was right, and her problems would clear up, sometimes immediately and dramatically. Through this process, they made major nutritional discoveries, which we all benefit from today, and honed TPN into a much better system that fully nourishes anyone needing it.
Tyler: What was the timeframe during which your father treated Judy Taylor. How have medical treatments for Judy’s illness changed since that time?
Shireen: Judy was on TPN from October 7, 1970 until February 22, 1991. Although there have been attempts at bowel transplants, the best method of nourishing a person with no intestines remains TPN. The medication that caused her bowels to die in the first place has been refined so that now it is much safer to use.
Tyler: Tell us about your own memories of Judy Taylor. How aware were you of your father’s work during this time?
Shireen: I write in “Lifeliner” about the first time I remember meeting Judy. I was 10 years old and in awe of this woman who could bake delicious cookies yet did not eat any of them. I couldn’t imagine anyone wanting to bake something that they couldn’t eat. But Judy did, and I liked her for that.
My father had been taking me down to his office or to his lab outside of office hours since I was about 8 years old whenever he needed to pick up files from his office or check up on patients or the progress of his research. It was a way to spend time with my father even when he had work to do or his patients needed him. Even so, I stayed quietly out of the way while he was actually working (or I like to think I was quiet). I was pretty inquisitive, and he would explain things to me, sometimes to my satisfaction, sometimes not. I had some idea that he helped a lot of people and knew that he was the hub of much activity, and seeing “Lester,” the pole that Judy’s TPN hung from, helped me understand more about the kind of medicine he was practicing. As I grew older, I learnt more about nutrition through him and met more of his patients. Talking to his patients was revealing. They revered him because he had not only saved their lives, but given them back quality of life. Some of them became part of our social life, inviting my parents to weddings or parties, and I saw the positive effect he had on their lives.
Tyler: Shireen, what would you say has been your father’s influence on you. Did it interest you in medicine?
Shireen: I’m told that I became interested in medicine when my grandfather had a heart attack and he was lying in the CCU. I was 11 years old, and I remember looking at all the machines around him in awe, trying to understand what they were doing, hating him being sick.
Like his grandmother did for him, my father taught me about good thoughts, good words, good deeds-the Zoroastrian creed. He taught me about drive and tenacity, about curiosity (although I needed no lessons in that really, being constantly in questioning mode it seemed) and about broadmindedness, about reading outside your area of expertise and about finding answers in unusual places. And he always entertains with stories of life in India or stories from the lab.
I decided in the end that medicine was not for me. I was far more fascinated by psychology and really enjoyed writing stories.
Tyler: How successful was the treatment for Judy-how long did TPN prolong her life?
Shireen: I calculate that TPN prolonged Judy’s life by 20 years, 4 months, 3 weeks, and 6 days. In that it allowed her to live and to live that many more years, it was successful. In that it allowed her to meet her goals and to inspire other people and to help thousands, it was more successful than anyone could have imagined back in 1970!
Tyler: How did Judy die? Did her stomach problems get the best of her eventually despite the TPN?
Shireen: She died from infection, probably one that started in her Gastrostomy tube, a tube she would not have needed if there had been enough bowel left to connect the two ends and create a natural exit for her stomach juices. Ironically, the area around her Gastrostomy tube healed in the last few weeks. The TPN though was her friend to the end.
Tyler: I understand “Lifeliner” depicts Judy’s personal struggle along with her medical one. What lessons would you say she learned and wanted to impart about her struggle?
Shireen: She believed passionately that “living with Lester, or your pump or whatever, is a whole lot better than the alternative,” namely death. She believed that life was worth fighting for and that faith and a sense of humour got you halfway there to coping with whatever life throws at you. Her sense of humour certainly helped her cope. Being able to joke about things that made her afraid enabled her to get through them. They say laughter is the best medicine, and she certainly proved that right!
She also told people that “you’ve got to live through today, not yesterday and not tomorrow, but just through today.” Those are wise words to live by for anybody. Worrying about what has happened in the past or what will happen in the future can really paralyse a person in the present and prevent them from just smelling the roses or enjoying the challenges that the day may bring.
Tyler:Shireen, what kind of response have you received so far from readers?
(For the response to this question, please see http://www.readerviews.com/)
Tyler: Shireen, you had your own medical issues while you were in the process of writing “Lifeliner.” Will you share that struggle with us? Did you find it ironic that you underwent a medical trauma at the time you were writing about one?
Shireen: Ironic and frustrating, to say the least. I was within sight of finishing “Lifeliner” when boom, a couple of drivers drastically changed my plans. But in a way the book helped me cope. Having the book as a goal kept me at my rehab, working as hard as I could to get better. Reminding myself of the words of Rev. Ed Bentley, Judy’s minister, in particular, while I was writing “Lifeliner” brought light to the issues I was grappling with.
This period of my life all started when I ventured out into 905-land for a simple errand in early Y2K. I should have known better. A 416er, a Toronto gal, should only enter the suburbs in an armor-plated car with inertial dampers and force field surrounds. Thump… BANG… Bang! Two high-flying cars shoved our stopped car into the car in front; my brain made like jello inside its solid skull, my neck like a whip. The final tally was a neck sprain, two shoulder sprains, impairment of blood supply into right arm (and a bit into left), ulnar nerve problems in the left arm, and a closed head injury.
It was the closed head injury in particular that changed my plans for a very long time. It slowed my processing down to a crawl (even today I still respond slower than normal); it destroyed my concentration and ability to focus and refocus after an interruption; I can no longer multi-task; I went from having a photographic memory to a poor one; I had trouble communicating, whether speaking or listening; I struggled with reading and learning, me who had started reading at age 2 or 3; I developed olfactory hallucinations; I lost myself; and I became very, very tired, a fatigue made worse by any mental or physical effort.
At the time of the crash, I was writing “Lifeliner: The Judy Taylor Story.” I had completed the research and three chapters and was in the middle of writing a chapter. I was on track to finishing it that year. After the crash, I thought I’d be able to get back to it within a few months. Needless to say, I couldn’t. It took me a long time to understand fully what a brain injury meant, and although I started outpatient neuro-rehab about 8 months after the crash and about when a brain scan showed abnormalities, it was many more months, if not years, before I accepted in my heart that I really had sustained a brain injury. And, as well, as my functioning improved bit by bit over the years, leading to doing more in the day, I would then bump into new problems with my cognition. The one that made me redouble my efforts to find treatment, as opposed to just learning how to compensate, was when I discovered I had lost the kind of problem solving abilities one uses in day-to-day work or social life. That was in 2005, over 5 years after the injury. Up to that point, the medical model had taught me compensating strategies for my cognitive difficulties, suggested taking a writing course to relearn how to write, and minimally helped me adapt to my new life, my new personality, and all the losses that I’d sustained as a result of the injury. But none of this actually healed the brain; that was left up to the brain to do on its own. Exercise and some supplements I took, as well as acupuncture, may have helped the brain heal, but not enough to make it possible for me to write “Lifeliner.”
Since I thought that the brain injury felt like ADD, I started to search for ADD treatment (I had been searching for brain-injury treatment or therapy for about 2 years at this point, with no results) and found the ADD Centre in Mississauga, a city on the west side of Toronto. God must have agreed this was the place I needed to go because first, the medical doctor who does the EEGs answered the phone when I rang, which was unusual. And second, an appointment in about 3 weeks had just opened up, and so I didn’t have to wait the usual 4 months. They assessed my functioning with computer tests and a 19-point EEG, and then they devised a treatment plan, using brain biofeedback. Basically, brain biofeedback is when the client has an electrode placed on a pre-determined spot on the head and then uses their brain to manipulate what’s on the computer screen in order to promote or depress certain brain waves.
These treatments made it possible for me to write “Lifeliner.” After two years of exhausting brain biofeedback treatments, some of which was experimental and which involved two electrodes placed on the head to improve coherence between two parts of the brain, I have regained a lot of my cognitive functioning. I can focus far better, I can write more words within my limitations (I still cannot write 16,000-word chapters like I used to, but it’s no longer as low as 800 words either), I’m more alert, I’m aware, my processing speed has increased measurably, and my speech is for the most part no longer flat but has prosody. I continue to use a neurofeedback unit at home to stimulate certain brain waves, and I still have enormous problems with, among other things, my stamina and with my reading-that is, understanding what I’m reading, remembering what I have read up to the point of where I’m at, learning from what I’ve read, and synthesizing it with previous knowledge-as well as other areas. But right now I’m taking a hiatus from the treatments while I market the book; I intend to return in the fall or early 2009. We’re also seeing how much spontaneous healing will occur during this time off.
However in spite of the large strides I made with the treatments by early 2006, I still needed “human resource” help, as my rehab team put it many years ago, in order to write my manuscript. I needed someone to be my lost organizational abilities, and Miriam Taylor found that person for me. Between the time I finished my manuscript and the time I decided to go with iUniverse, I healed more, to the extent that I was able to work with iUniverse’s editors in 2007 to add more to the story under their direction. I decided to go with iUniverse because I had already lost 7 years, and I didn’t want to wait any longer to see it in print. I had also heard good things about iUniverse and wasn’t disappointed.
I am pleased with the results. I have accepted the fact that the book I wrote is different from what I had planned; I hit the highlights of Judy’s life. Plus it is finished.
Tyler: Shireen, you have had such a diverse background in science and in writing. What made you decide to focus on Judy Taylor’s story for your first full-length book?
Shireen: A friend of Judy’s and mine suggested to me that someone should write her story. A light bulb went off in my head. I had been writing short stories for a few years at that point, and Judy Taylor’s story seemed to me a good way to get into writing books. Hers was a fascinating life, I knew the characters personally, and it excited me to write on a subject that no one else had. So often we tell the same stories in different ways, but in this case no one had written about TPN for the general population, and no one had written about this Canadian pioneering duo of Judy and Jeej. I started immediately.
Tyler: Do you think you will write any more books, despite the difficulties your injuries have caused you, or what do you plan to do next in your life?
Shireen: Writing is my love and my passion. I may have limitations, but I cannot foresee a future without it.
Tyler: Shireen, how does your father feel about your having written his and Judy’s story?
Shireen: Very pleased! He was delighted and supportive that I took the trouble to do it, particularly to write the story from Judy’s angle.
Tyler: Thank you for joining me today, Shireen. Before we go, will you tell us about your website and what additional information may be found there about “Lifeliner”?
Shireen: It was my pleasure Tyler. My website is at http://jeejeebhoy.ca/ and visitors can find a wealth of information there. I have a sneak peek into “Lifeliner,” reviews, a blog, relevant links, pages on me and Dr. Jeejeebhoy, photographs of Judy and her lifeline, articles translated from the original Swedish on Judy, references, a Guestbook, and direct affiliate links to purchase “Lifeliner” at the big online bookstores in Canada, the U.S., and Europe. Visitors can also subscribe to the site to be notified of any upcoming events or news about “Lifeliner.” I update it regularly and have in the pipeline some new features I want to add, like questions for book clubs and more stories.
Tyler: Thank you, Shireen, for sharing Judy, Dr. Jeejeebhoy and your story with us. I hope it inspires many people.
Shireen: Thank you Tyler.
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