曉海平靜
博主凡事愛發表感想，希望以文會友。
醫學生日記2016年3月18日-兩個氣管手術的故事
作者：阿山 （龐靜譯）(原文存在譯文之後）
先介紹一下故事的背景，這裏說的氣管手術就是所有打通呼吸道手術的簡單說法。相對於插管用呼吸機的輔助方法，氣管手術是植入一段氣管，使患者呼吸瞬間通暢。但手術過程需要麻醉，病人需要在醫院監護。這裏我要講的是這兩天發生的兩個氣管手術的故事。
第一天 - 女嬰兒
我在這裏稱我們的病人為女嬰兒。她是一個極端的早產兒。這麽說吧，我第一次在新生兒特護病房見到她的那個星期是她的預產期，可是她在病房已經生存了幾個月。那樣極端的早產兒有很多問題，她奇跡般地經曆了肺、心髒、腎和腦部的治療（歸功於現代兒科醫學）。我們現在要處理她的最後一個麻煩：她無法用自己的氣管呼吸。
從她出生開始她就用插管輔助呼吸。每次醫生試圖撥出管子讓她自己呼吸，她都開始窒息。我們已經知道她的肺沒問題。檢查發現她的氣管特別窄。本來她的氣管已經很窄了，插入的管子又會造成進一步的不適，引起氣管發炎腫脹，變得更狹窄，如此形成了一個惡性循環。看上去這個插管是幫她維生，但是，必須依靠呼吸機和麻醉藥的生命真實嗎？
氣管手術是先做一個空氣叉道，也就是給氣管搭橋，讓本來發炎腫脹的氣管有一段複原時間，手術之後女嬰兒就可以出院了。關鍵不在這裏，女嬰兒如果帶著這個人工氣管橋出院，她就不能回家。這就使故事變複雜了。女嬰兒的母親有嚴重的糖尿病，已經是法律認可了的盲人。由於她無法料理氣管橋，她會失去女嬰兒的監護權。不用多說，誰都知道，女嬰兒的母親渴望保住監護權。
要按有些醫生的說法，這個故事變得更加複雜。有些醫生說：這個女人自己都無法照顧好自己的糖尿病，她怎麽可能照顧好一個需要繁瑣醫療護理的嬰兒呢？另外一些醫生說：他們相信年輕母親天性的愛，他們見過很多父母，自己弄得亂七八糟，但卻把自己的孩子照顧得非常好。做為醫生，我們被教育成要避免用自己的想法去判斷我們的病人。
這個故事還沒有結局。母親的尿檢顯示了非法藥物。女嬰兒出生時血液裏也有非法藥物。這些證據是不是足夠自動取消母親保住監護權的希望？這是爭論的主題。
我們又檢查了她的氣管，希望找到造成她窒息的其它原因，然後，無論氣管多窄，她都能正常呼吸。醫生發現了一個小包，送去活檢。醫生一直說可能是個良性腫瘤。如果真是個良性瘤，就可以切除，就能指望女嬰兒正常呼吸，也就不需要為她做氣管手術，然後把她和她媽々分開。但是住院醫學長告訴我，可以99%的肯定女嬰兒的窒息是由於她的氣管發炎腫脹。
現在，我們希望是個良性瘤，那是一個我們可以治愈的病灶。這樣我們就不用在這麽左右為難的位置上，去做那個氣管手術，把一個嬰兒和愛她的媽媽分開。現在，我們正在等活檢報告。
第二天 - 戴西
為了講這個故事，我稱病人為戴西。她和女嬰兒十分不同。她已經十歲了，幾年前就做了氣管手術。由於十分罕見的遺傳紊亂，戴西的出生非常不幸。癲癇，神經退化性變異，肌肉萎縮造成了她的瘸腿，她的一生都在骨骼變形。
由於氣管手術之後，唾液可以直接進入肺部，增加了了患者得吸入性肺炎的風險。這就是戴西今天在這兒的原因。耳鼻喉專科醫生和戴西的媽媽談了一下氣管手術的方案，在排除肺炎的風險的同時，戴西發聲的能力也會被排除。戴西一直不會講話，但是用一個小的輸助儀器，她可以發聲。用她媽々的話說，她有聲音。
由於其它狀況，我們去病房為戴西換那段人工氣管。有誰想驗證母愛，就來看々當兩個年輕的醫生為女兒換人工氣管時母親是怎樣的。這個過程應該會有少量出血。可是，我們剛一加上儀器，血一下就噴出來，賤得到處都是。當時的情景是這樣的：戴西躺在床上，大概是我的腰的高度，我握住了戴西脖子中間那段管子，戴西用盡了她那變異神經和肌肉的所有能力顫抖著，鮮血竄出幾尺以外，也賤到了我的臉上。戴西的媽媽站在離我一尺的位置，極度痛苦地對著住院醫學長又哭又喊，住院醫學長終於換好了人工氣管。整個過程，戴西的眼睛一直盯著媽媽。我可以看到她眼中的恐懼，也可以感受到她知道她媽媽對她的愛和關心。因為疾病，她腦子想不了太多，但她依然知道恐懼和愛。
整個過程大概用了兩分鍾。事後我問學長，知道了這是一個很平常的手術，包括出血。但是，無論如何，這對一個家庭是很震撼的。對於病人，不像想象的那麽痛苦。但是，想象一下：兩個戴著麵罩的年輕男人站在你的麵前，他們的手抓著你的脖子。
後來，主治醫生來與媽媽談話，為她的所見安慰了她，並且為我們事先欠考慮道了歉。醫生又繼續跟母親談下一個改進戴西狀況的氣管手術。為此戴西可能失去她的發聲能力。但是剛才我已經親眼目睹了戴西有智力表達愛、快樂、和恐懼。現在，為了防止肺炎，萬一染上肺炎，很難治愈，為了女兒的長久健康，我們讓母親放棄女兒的聲音，母親卻完全不理解。
還有一線希望：由於修改了生理結構，戴西就可以吃東西了。先前手術之後，病人什麽東西都不能吃，隻能用食管喂食。醫生勸說：戴西的生命已經承受太多痛苦，為了讓她能夠嚐一嚐冰激淩的味道，這個手術難道不是很有意義嗎？
戴西的母親認可了下一個手術。
原文
March 18, 2016 – A Tale of Two Trachs
For some background information, a tracheotomy (trach) is a procedure done to open the airway. A tube is inserted to allow for spontaneous breathing and mobility, in contrast with intubation, which requires the patient be sedated and monitored in the hospital. Here are two stories seen on back-to-days involving trachs.
Day 1 – Baby Girl
I will just refer to our patient as Baby Girl. She was born extremely prematurely, where the first time I was meeting her in the Neonatal ICU (NICU) was the week she was supposed to be born, but she had already been alive for several months. Babies born that early tend to have a lot of problems, yet she had miraculously made it through the lung, heart, kidney, and brain troubles (which is a tribute to modern pediatric medicine). We were seeing her for her last problem, she could not breathe through her airway.
She had been intubated since the day she was born. Every time the doctors attempted to take the tube out so she could breathe on her own, she would start suffocating. It was already determined the problem wasn’t in her lungs. Examinations of her airway showed that it had narrowed extensively. Here’s the definition of a vicious cycle, her airway was already small and having a tube in will irritate the airway. The irritation will cause the airway to inflame, swell, and get even narrower. So the tube was keeping her alive, but was it truly life when she was dependent upon a ventilation machine and sedation?
A trach would have bypassed the narrow airway, allowed time for the airway to recover, and allowed Baby Girl to leave the hospital. Key to not here, Baby Girl would have left the hospital, but she would not have gone home with the trach. Here is where the story gets complicated. Baby’s Girl’s mother is severely diabetic and already legally blind. She would have legally lost custody of Baby Girl because she wouldn’t be able to take care of the trach. Needless to say, Baby Girl’s mother was desperate to keep custody.
And a complicated story gets even messier. As some doctors put it, this woman couldn’t even take care of her own diabetes, how could she be expected to take care of a baby with complicated medical needs? Other doctors said, they believed in this young mother’s love, we’ve seen plenty of parents take excellent care of their children despite taking terrible care of themselves. Also as doctors, we’re taught we have to try to avoid locking in our judgments of our patients.
The story doesn’t end. The mother had illegal drugs present in her urine. Enough so that there were illegal drugs detected in Baby Girl’s blood at birth. There was debate as to whether this was enough criteria to automatically eliminate the mother’s hope of maintaining custody.
We examined her airway again, hoping to find some other reason she was suffocating that was unrelated to her narrow airway, that she could possibly move air normally despite the narrowing. There was a bump and the ENT doctor sent it to biopsy. He kept saying it could be a benign tumor. If it was a benign tumor, they could remove it and Baby Girl would hopefully start breathing normally, without having to do a trach and separate her from her mother. The resident told me it was 99% likely to be inflammation and swelling due to the tube.
So here we are, actually hoping for a tumor – something we can treat, so we don’t have to be put in the impossible position of putting in a trach and separating a baby from her mother that loves her. And now, we wait for the biopsy results.
Day 2 – Daisy
I will call this patient Daisy for the sake of this story. She’s quite different from Baby Girl, she’s already 10, and has had a trach for several years. Daisy lost the lottery at birth with an extremely rare genetic disorder that arises randomly. She’s been crippled by seizures, neurodegeneration, muscle atrophy, and skeletal deformities her whole life.
Having a trach puts patients at increased risk of aspiration pneumonia, since the saliva can freely flow into the lungs. That was why Daisy was here today. The ENT doctor had a conversation with the mother about a modifying procedure that would remove the risk for pneumonia, but also remove Daisy’s ability to phonate. Daisy had never been able to speak, but with a small attachment device, she had been able to make sounds. In her mother’s words, she had a voice.
We went in the room to change Daisy’s trach for some other medical indications. For those who ever need to verify a mother’s love, watch how a mother behaves as she watches two young medical staff work on her child. Some minor bleeding was expected as part of the procedure. However, given the nature of the trach device, the blood was shot out in spurt through the trach. So here’s the sight, I’m holding the trach in place in the middle of Daisy’s neck, she’s lying in the bed at about the level of my waist, trembling and shaking as much her highly degenerated nerves and muscles would allow her, and blood is shooting out a few feet, high enough that several drops were splattered on my face. Daisy’s mother was 1 foot behind me, in the agonizing combination of screaming, crying, and shouting at the resident finalizing the trach placement. All this while, Daisy’s eyes were fixed on her mother. I could see the fear in her eyes, and knew that she knew that her mother loved and cared for her. She didn’t have much mental function left because of her disease, but she still knew fear and love.
All of this took about 2 minutes. I asked the resident afterwards, and this is a very routine procedure, including the bleeding. But nevertheless, it is a very disturbing sigh for family. For the patient, it is not as painful as expected, but imagine being a young girl and having two masked men standing over you with their hands on your neck.
The attending physician came and talked to the mom later, consoled her for what she witnessed, and apologized that we had not thought to be more sensitive. He then continued to talk to her about the procedure to update the trach. Daisy would lose the ability to make sound, which I had just witnessed that Daisy had the mental function to express love, happiness, and fear. So we are asking this mother to give up her daughter’s voice, for the sake of preventing pneumonias that she doesn’t completely understand are difficult to treat and damaging to her daughter’s health in the long run.
But there was one silver lining. Because of the modified anatomy, Daisy would be able to have food again. The basic trach doesn’t allow for patients to eat anything, and they are fed through a tube. The doctor explained, Daisy has so much suffering in her life. How meaningful would it be if she would be able to taste ice cream again?
Daisy’s mother consented to the procedure.
