We are back where we started...I mean back in room 437 where Sarah was admitted on January 7 - two weeks ago tomorrow. It has a much nicer view than the room she was given upon leaving intensive care - there are not too many medical centers where having a room with a view is a consideration.
Eliza and I went with Sarah to the endoscopy suite (sort of an oxymoron) to be with her until the procedure began. Sarah was wheeled away to the procedure room. About 15 minutes later, Seddon arrived to tell me that her throat cultures were growing copious quantities of candida albicans - yeast. She has thrush - not a surprising consequence of high dose antibiotic therapy. There was a reasonable chance that her swallowing problems were the result of a yeast infection. After wondering at the fact that the simple matter of a throat culture was occurring two weeks into a hospitalization during which Sarah has been unable to swallow, we decided that the endoscopists needed to have this new information right away. They left the procedure partially completed to talk with us. They said that Sarah's esophagus was completely free of inflammation - she did not have esophagitis. They were ready to dilate the narrow passageway at the site of her bowel surgery when she was a few hours old thinking that maybe her symptoms were due to an obstruction at this site. They asked us if they should go ahead with the dilatation "since we know Sarah best." The risks: bleeding (Sarah would need to go back on her blood thinning treatment within a few hours) and possible bowel perforation (Was Sarah in any shape to tolerate an emergency abdominal operation most likely in the middle of the night?). We had a possible, simpler cause for swallowing problems (severe yeast infection in her throat), and her symptoms were not completely consistent with a small bowel obstruction (no real vomiting, just retching soon after putting food in her mouth). The argument in favor of dilating her narrowed bowel: we are already there, we might as well try it. For us, that sounded like the prelude to a new nightmare. What was it that Hippocrates said and that every medical school student repeats at graduation? Do no harm, I think it was.
So, we pulled the plug on the dilatation in favor of treating the yeast infection in her throat first. If that fails, we may have to go back to the dilatation, but if it succeeds we may have spared Sarah at least some risk in the midst of all of the mortal risk that she has had to face in these two short (?short) weeks. Seddon needs to be credited with standing down three gastroenterologists who wanted to finish their planned procedure on Sarah "because they were already there." To their credit, they recognized the peril of ignoring the instincts of a mother.
Sarah's knee is still sore, but since it did not yield a treatable diagnosis, it seems to have become an uninteresting part of Sarah's body - no one has looked at it in 24 hours. With the help of Sarah's nurse, we removed the ACE wrap dressing tonight ourselves, and that seems to have made Sarah more comfortable. She is still troubled by a sore and red right eye. We'll see if we can drum up some more interest in that tomorrow.
As I sit on the cot next to Sarah's bed writing this post, I am warmed by the sight of Sarah with her laptop fired up writing the first essay of Volume 2 of her "selected essays" about her life's journey. She has an array of the clear liquids that she is allowed tonight - jello, chicken broth, apple juice, water, even diet Coke (no ice) - and seems so far to be tolerating them. Maybe we're getting ready to imagine continuing this new "life's journey" with Sarah and her siblings.
Oh, one more thing, I had the strangest experience two nights ago when it was my turn to sleep on the cot in Sarah's room. In the darkest hour while Sarah slept, I awoke to a rhythmic, regular click - click - clicking sound. It seemed incredibly loud in the otherwise silent hospital room. Oh my God, I thought, the heart valve! This is what Sarah will be listening to for the rest of her life. I thought if this sound was locked inside my most vital organ that I would not be able to tolerate it. Then I remembered the large wall clock in her room with the second hand that jumps with an audible click from second to second, and felt relieved. At least the passage of time makes more noise than Sarah's renovated heart.
Eliza and I went with Sarah to the endoscopy suite (sort of an oxymoron) to be with her until the procedure began. Sarah was wheeled away to the procedure room. About 15 minutes later, Seddon arrived to tell me that her throat cultures were growing copious quantities of candida albicans - yeast. She has thrush - not a surprising consequence of high dose antibiotic therapy. There was a reasonable chance that her swallowing problems were the result of a yeast infection. After wondering at the fact that the simple matter of a throat culture was occurring two weeks into a hospitalization during which Sarah has been unable to swallow, we decided that the endoscopists needed to have this new information right away. They left the procedure partially completed to talk with us. They said that Sarah's esophagus was completely free of inflammation - she did not have esophagitis. They were ready to dilate the narrow passageway at the site of her bowel surgery when she was a few hours old thinking that maybe her symptoms were due to an obstruction at this site. They asked us if they should go ahead with the dilatation "since we know Sarah best." The risks: bleeding (Sarah would need to go back on her blood thinning treatment within a few hours) and possible bowel perforation (Was Sarah in any shape to tolerate an emergency abdominal operation most likely in the middle of the night?). We had a possible, simpler cause for swallowing problems (severe yeast infection in her throat), and her symptoms were not completely consistent with a small bowel obstruction (no real vomiting, just retching soon after putting food in her mouth). The argument in favor of dilating her narrowed bowel: we are already there, we might as well try it. For us, that sounded like the prelude to a new nightmare. What was it that Hippocrates said and that every medical school student repeats at graduation? Do no harm, I think it was.
So, we pulled the plug on the dilatation in favor of treating the yeast infection in her throat first. If that fails, we may have to go back to the dilatation, but if it succeeds we may have spared Sarah at least some risk in the midst of all of the mortal risk that she has had to face in these two short (?short) weeks. Seddon needs to be credited with standing down three gastroenterologists who wanted to finish their planned procedure on Sarah "because they were already there." To their credit, they recognized the peril of ignoring the instincts of a mother.
Sarah's knee is still sore, but since it did not yield a treatable diagnosis, it seems to have become an uninteresting part of Sarah's body - no one has looked at it in 24 hours. With the help of Sarah's nurse, we removed the ACE wrap dressing tonight ourselves, and that seems to have made Sarah more comfortable. She is still troubled by a sore and red right eye. We'll see if we can drum up some more interest in that tomorrow.
As I sit on the cot next to Sarah's bed writing this post, I am warmed by the sight of Sarah with her laptop fired up writing the first essay of Volume 2 of her "selected essays" about her life's journey. She has an array of the clear liquids that she is allowed tonight - jello, chicken broth, apple juice, water, even diet Coke (no ice) - and seems so far to be tolerating them. Maybe we're getting ready to imagine continuing this new "life's journey" with Sarah and her siblings.
Oh, one more thing, I had the strangest experience two nights ago when it was my turn to sleep on the cot in Sarah's room. In the darkest hour while Sarah slept, I awoke to a rhythmic, regular click - click - clicking sound. It seemed incredibly loud in the otherwise silent hospital room. Oh my God, I thought, the heart valve! This is what Sarah will be listening to for the rest of her life. I thought if this sound was locked inside my most vital organ that I would not be able to tolerate it. Then I remembered the large wall clock in her room with the second hand that jumps with an audible click from second to second, and felt relieved. At least the passage of time makes more noise than Sarah's renovated heart.
Hi Sarah,
ReplyDeleteI am glad to hear you are back in your first room, and that you are busy writing on your computer.
I really enjoyed talking with you at Thanksgiving. We had a nice chat.
I hope you are feeling much better soon!
Your cousin Beth
instincts of a mother, nice call....
ReplyDeletelove and prays to all, stay strong
kathy lowe came up to my room performed healing sound / vibration therapy......peaceful
thank you for sharing your journey