医学生日记2016年3月18日-两个气管手术的故事

作者：阿山 （庞静译）(原文存在译文之后）

先介绍一下故事的背景，这里说的气管手术就是所有打通呼吸道手术的简单说法。相对于插管用呼吸机的辅助方法，气管手术是植入一段气管，使患者呼吸瞬间通畅。但手术过程需要麻醉，病人需要在医院监护。这里我要讲的是这两天发生的两个气管手术的故事。

第一天 - 女婴儿

我在这里称我们的病人为女婴儿。她是一个极端的早产儿。这么说吧，我第一次在新生儿特护病房见到她的那个星期是她的预产期，可是她在病房已经生存了几个月。那样极端的早产儿有很多问题，她奇迹般地经历了肺、心脏、肾和脑部的治疗（归功于现代儿科医学）。我们现在要处理她的最后一个麻烦：她无法用自己的气管呼吸。

从她出生开始她就用插管辅助呼吸。每次医生试图拨出管子让她自己呼吸，她都开始窒息。我们已经知道她的肺没问题。检查发现她的气管特别窄。本来她的气管已经很窄了，插入的管子又会造成进一步的不适，引起气管发炎肿胀，变得更狭窄，如此形成了一个恶性循环。看上去这个插管是帮她维生，但是，必须依靠呼吸机和麻醉药的生命真实吗？

气管手术是先做一个空气叉道，也就是给气管搭桥，让本来发炎肿胀的气管有一段复原时间，手术之后女婴儿就可以出院了。关键不在这里，女婴儿如果带着这个人工气管桥出院，她就不能回家。这就使故事变复杂了。女婴儿的母亲有严重的糖尿病，已经是法律认可了的盲人。由于她无法料理气管桥，她会失去女婴儿的监护权。不用多说，谁都知道，女婴儿的母亲渴望保住监护权。

要按有些医生的说法，这个故事变得更加复杂。有些医生说：这个女人自己都无法照顾好自己的糖尿病，她怎么可能照顾好一个需要繁琐医疗护理的婴儿呢？另外一些医生说：他们相信年轻母亲天性的爱，他们见过很多父母，自己弄得乱七八糟，但却把自己的孩子照顾得非常好。做为医生，我们被教育成要避免用自己的想法去判断我们的病人。

这个故事还没有结局。母亲的尿检显示了非法药物。女婴儿出生时血液里也有非法药物。这些证据是不是足够自动取消母亲保住监护权的希望？这是争论的主题。

我们又检查了她的气管，希望找到造成她窒息的其它原因，然后，无论气管多窄，她都能正常呼吸。医生发现了一个小包，送去活检。医生一直说可能是个良性肿瘤。如果真是个良性瘤，就可以切除，就能指望女婴儿正常呼吸，也就不需要为她做气管手术，然后把她和她妈々分开。但是住院医学长告诉我，可以99%的肯定女婴儿的窒息是由于她的气管发炎肿胀。

现在，我们希望是个良性瘤，那是一个我们可以治愈的病灶。这样我们就不用在这么左右为难的位置上，去做那个气管手术，把一个婴儿和爱她的妈妈分开。现在，我们正在等活检报告。

第二天 - 戴西

为了讲这个故事，我称病人为戴西。她和女婴儿十分不同。她已经十岁了，几年前就做了气管手术。由于十分罕见的遗传紊乱，戴西的出生非常不幸。癫痫，神经退化性变异，肌肉萎缩造成了她的瘸腿，她的一生都在骨骼变形。

由于气管手术之后，唾液可以直接进入肺部，增加了了患者得吸入性肺炎的风险。这就是戴西今天在这儿的原因。耳鼻喉专科医生和戴西的妈妈谈了一下气管手术的方案，在排除肺炎的风险的同时，戴西发声的能力也会被排除。戴西一直不会讲话，但是用一个小的输助仪器，她可以发声。用她妈々的话说，她有声音。

由于其它状况，我们去病房为戴西换那段人工气管。有谁想验证母爱，就来看々当两个年轻的医生为女儿换人工气管时母亲是怎样的。这个过程应该会有少量出血。可是，我们刚一加上仪器，血一下就喷出来，贱得到处都是。当时的情景是这样的：戴西躺在床上，大概是我的腰的高度，我握住了戴西脖子中间那段管子，戴西用尽了她那变异神经和肌肉的所有能力颤抖着，鲜血窜出几尺以外，也贱到了我的脸上。戴西的妈妈站在离我一尺的位置，极度痛苦地对着住院医学长又哭又喊，住院医学长终于换好了人工气管。整个过程，戴西的眼睛一直盯着妈妈。我可以看到她眼中的恐惧，也可以感受到她知道她妈妈对她的爱和关心。因为疾病，她脑子想不了太多，但她依然知道恐惧和爱。

整个过程大概用了两分钟。事后我问学长，知道了这是一个很平常的手术，包括出血。但是，无论如何，这对一个家庭是很震撼的。对于病人，不像想象的那么痛苦。但是，想象一下：两个戴着面罩的年轻男人站在你的面前，他们的手抓着你的脖子。

后来，主治医生来与妈妈谈话，为她的所见安慰了她，并且为我们事先欠考虑道了歉。医生又继续跟母亲谈下一个改进戴西状况的气管手术。为此戴西可能失去她的发声能力。但是刚才我已经亲眼目睹了戴西有智力表达爱、快乐、和恐惧。现在，为了防止肺炎，万一染上肺炎，很难治愈，为了女儿的长久健康，我们让母亲放弃女儿的声音，母亲却完全不理解。

还有一线希望：由于修改了生理结构，戴西就可以吃东西了。先前手术之后，病人什么东西都不能吃，只能用食管喂食。医生劝说：戴西的生命已经承受太多痛苦，为了让她能够尝一尝冰激凌的味道，这个手术难道不是很有意义吗？

戴西的母亲认可了下一个手术。

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.