I'm afraid that the predominant message of remarkable progress toward recovery of most of the previous posts has obscured a problem that we have been worried about and grappling with since Sarah's admission. That problem has now complicated Sarah's course so this post, I am sorry to say, cannot have the positive tone of many of the others.
I'll try to be civil, but if I didn't think that emoticons were a little silly, this might be the place for an angry one, or a frustrated one. Don't misunderstand what I feel the need to say, Sarah has had great, literally life-saving care thanks to amazing expertise and resources and fabulous nursing care for which we are so grateful to all involved. But...
As her cardiologist said the other day, "Sarah comes with a history." In fact, all patients, even the newest of newborns, come with a history, and doctors need to familiarize themselves with this history and continually take it into consideration. Patients also come with a body, the assessment of which is called a physical examination. Even in this age of advanced imaging technology, the physical examination can be informative. Finally, to use that advanced imaging technology to its full advantage, it is important to be looking not only for what was in question but also for the unexpected, unanticipated, and seemingly unrelated.
Prior to this hospital admission as she was becoming ill with endocarditis, Sarah lost her appetite, stopped eating her usual foods, and lost weight. Soon after admission, she began have heart rending (hers and ours) bouts of retching with even small tastes of nearly all foods. The retching was made worse by long periods of severe heart burn and sore throat related to refluxed stomach acid. She tolerated sips of clear liquids, Popsicles, some applesauce, and almost nothing else. This "symptom" has continued unchanged to this moment except that her open heart surgery left a great vertical incision down the center of her chest - imagine how 40 minutes of retching and gastric reflux feels with that. We began saying last week that we believed her intolerance of food had a specific cause, that she had a history of GERD (gastroesophageal reflux disease) and might have developed inflammation of her esophagus (esophagitis), that just a year ago she had developed an obstruction of the 26 year old repair of her blocked intestines that had been done only hours after her birth - her symptoms a year ago were very much like her symptoms now. (Yes, Sarah has a history.) We asked each day for an assessment of her symptoms, not just treatment. We hoped for the creation of what in medicine is called a differential diagnosis, which is a list of all of the things that could be causing a symptom or set of symptoms. Then a process of elimination takes place ruling out all of the causes that don't fit - hopefully, finally leaving the real culprit. We suggested a gastroenterology consultation.
Today, finally, Sarah was seen by the gastroenterologists who reviewed Sarah's history of bowel surgery at birth, bowel obstruction a year ago, and current symptoms - her history. They looked at all of the information on the CT scan done last week before Sarah's leg surgery to look for emboli (clots) in the blood vessels of the bowels (there weren't any). They listened to her family. They examined her. They developed a differential diagnosis for her problem. The process of elimination led quickly to the conclusion that Sarah probably has a recurrence of the bowel obstruction that she was hospitalized, diagnosed, and treated for a year ago in this hospital. She will have to have an endoscopy tomorrow morning to re-dilate this narrowed area. The good news is that this may solve the problem, the bad news is that she will have one more procedure, one more anesthesia, one more recovery room experience - and all of this information was available a week ago.
How to digest this? It is hard to be angry at the people who saved Sarah's life and nourished her recovery from major surgery. No doubt they want the best for her and for their handiwork. The problems are less individual and personal, and more systemic and cultural - not very satisfying targets for a parent's rage. (Did I say rage? - well, I'm mostly tired, sad, disappointed, and upset for the extra week of misery that Sarah has experienced.) The remarkably complex care provided in great tertiary medical centers is founded on highly specialized knowledge and skills. However, that same specialization can create disastrously fragmented thinking. The absence of a holistically-minded expert generalist physician responsible for integrating findings and opinions of various specialists and tests with the patient's history and physical examination places a patient with complex problems like Sarah's at risk.
Sarah's care may also be affected by the fact that her history is that of complicated childhood onset conditions which are generally unfamiliar even to the most sophisticated adult medical and surgical specialists. The life-long implications of duodenal atresia repaired shortly after birth may be lost upon adult-oriented physicians with the possible exception of the gastroenterologists - who were the last players to join the game in Sarah's case. And what about the redness of her right eye that also worries us? What about the painful and swollen right knee that turned up today? One thing at a time is perhaps best or the best we can expect.
This wasn't what I'd planned to write about today. I thought it would be more about pacemakers, Coumadin, home care, and rehabilitation. Looks like those topics will have to wait for another day.
I'll try to be civil, but if I didn't think that emoticons were a little silly, this might be the place for an angry one, or a frustrated one. Don't misunderstand what I feel the need to say, Sarah has had great, literally life-saving care thanks to amazing expertise and resources and fabulous nursing care for which we are so grateful to all involved. But...
As her cardiologist said the other day, "Sarah comes with a history." In fact, all patients, even the newest of newborns, come with a history, and doctors need to familiarize themselves with this history and continually take it into consideration. Patients also come with a body, the assessment of which is called a physical examination. Even in this age of advanced imaging technology, the physical examination can be informative. Finally, to use that advanced imaging technology to its full advantage, it is important to be looking not only for what was in question but also for the unexpected, unanticipated, and seemingly unrelated.
Prior to this hospital admission as she was becoming ill with endocarditis, Sarah lost her appetite, stopped eating her usual foods, and lost weight. Soon after admission, she began have heart rending (hers and ours) bouts of retching with even small tastes of nearly all foods. The retching was made worse by long periods of severe heart burn and sore throat related to refluxed stomach acid. She tolerated sips of clear liquids, Popsicles, some applesauce, and almost nothing else. This "symptom" has continued unchanged to this moment except that her open heart surgery left a great vertical incision down the center of her chest - imagine how 40 minutes of retching and gastric reflux feels with that. We began saying last week that we believed her intolerance of food had a specific cause, that she had a history of GERD (gastroesophageal reflux disease) and might have developed inflammation of her esophagus (esophagitis), that just a year ago she had developed an obstruction of the 26 year old repair of her blocked intestines that had been done only hours after her birth - her symptoms a year ago were very much like her symptoms now. (Yes, Sarah has a history.) We asked each day for an assessment of her symptoms, not just treatment. We hoped for the creation of what in medicine is called a differential diagnosis, which is a list of all of the things that could be causing a symptom or set of symptoms. Then a process of elimination takes place ruling out all of the causes that don't fit - hopefully, finally leaving the real culprit. We suggested a gastroenterology consultation.
Today, finally, Sarah was seen by the gastroenterologists who reviewed Sarah's history of bowel surgery at birth, bowel obstruction a year ago, and current symptoms - her history. They looked at all of the information on the CT scan done last week before Sarah's leg surgery to look for emboli (clots) in the blood vessels of the bowels (there weren't any). They listened to her family. They examined her. They developed a differential diagnosis for her problem. The process of elimination led quickly to the conclusion that Sarah probably has a recurrence of the bowel obstruction that she was hospitalized, diagnosed, and treated for a year ago in this hospital. She will have to have an endoscopy tomorrow morning to re-dilate this narrowed area. The good news is that this may solve the problem, the bad news is that she will have one more procedure, one more anesthesia, one more recovery room experience - and all of this information was available a week ago.
How to digest this? It is hard to be angry at the people who saved Sarah's life and nourished her recovery from major surgery. No doubt they want the best for her and for their handiwork. The problems are less individual and personal, and more systemic and cultural - not very satisfying targets for a parent's rage. (Did I say rage? - well, I'm mostly tired, sad, disappointed, and upset for the extra week of misery that Sarah has experienced.) The remarkably complex care provided in great tertiary medical centers is founded on highly specialized knowledge and skills. However, that same specialization can create disastrously fragmented thinking. The absence of a holistically-minded expert generalist physician responsible for integrating findings and opinions of various specialists and tests with the patient's history and physical examination places a patient with complex problems like Sarah's at risk.
Sarah's care may also be affected by the fact that her history is that of complicated childhood onset conditions which are generally unfamiliar even to the most sophisticated adult medical and surgical specialists. The life-long implications of duodenal atresia repaired shortly after birth may be lost upon adult-oriented physicians with the possible exception of the gastroenterologists - who were the last players to join the game in Sarah's case. And what about the redness of her right eye that also worries us? What about the painful and swollen right knee that turned up today? One thing at a time is perhaps best or the best we can expect.
This wasn't what I'd planned to write about today. I thought it would be more about pacemakers, Coumadin, home care, and rehabilitation. Looks like those topics will have to wait for another day.
Ouch, my heart breaks for you guys, as a nurse and as a friend. You have eloquently explained the major weakness of current medicine. We think we have come so far and then we take a 1000 steps backwards.
ReplyDeleteI am so sorry Sarah and all of you have to deal with one more thing.
You have my heart and my prayers.
Mary
I have been thinking of you all day. You so eloquently described the frustration with medicine these days. We are so focused on our isolated part we don't look at the whole picture.
ReplyDeleteI love the pictures of the bear/bunny/dog.
thoughts an prayers
Tricia