Saturday, December 14, 2013

诊断 Diagnosis

21.11.13,宝贝第58天,
被安排了住进病房后,很快就有大小医生来了。第一位见的医生是Dr Teoh,他也是告诉了我们同样的东西。收拾好的心情也稍微的被说得激动了起来,当听到他说如果Liver failed之后的后果。我完全没有想过,我将要面对的,还包括会失去她。对于Biliary Atresia这个病,我一开始以为的是,里面胆管阻塞了,要接驳,接了就没事了,原来并不。女儿也开始被吊点滴准备绝食做ultrasound scanning来确认是否真的是BA。Ultrasound scan出来的结果是insufficient result,
因为从ultrasound中是能够看到bile duct和gallbladder(通常BA是无法看到的),这时候我们又燃起了希望。手术team讨论之后,就决定安排女儿星期一直接进行OTC(On table cholangiography),开小部分来直接检查肝脏的状况和输入某种液体来检查哪里阻塞。有可能性是可能她里面只是小阻塞,能靠这次的液体输入来清通。

当天晚上,我们从4人房被转去了2人房,隔壁床位是位华裔少女。起初也只是互相微笑,之后可能她母亲听到医生跟我们的说话内容之后,跟我聊了一下。原来她女儿也是Biliary Atresia患者,只是做了Kasai手术活到了现在19岁,算是很成功的例子了。她安慰我说这个病的孩子其实也可以和其他孩子一样,只是需要特别照顾和留意一旦她们发烧的话,就要倒回来马大医院而不是去一般的诊所而已。听了她们的例子之后,我仿佛更加有信心和有希望了。

手术前的几天,医生交代尽量/最好不要有探望者。因为这段期间不能让她发烧。

25.11.13,宝贝第62天
我知道医院已经以最快的速度来进行手术了,虽然手术的黄金60天我是肯定错过了,不过也不会太迟。当天的凌晨2点,我女儿就必须开始绝食到早上9点多来进行手术。那一段时间她哭得很惨,怎么抱也没用,哭到累了就挂着满脸泪痕睡。终于忍到了9点半,护士开始进来准备要把她推去手术室。看着她被推出去的时候,我并没跟上去,因为我知道我忍不住的,我不想再给女儿看到我哭。留在病房里,还是忍不住让眼泪一直留,隔壁的妈妈安慰我说没事的,要坚强。把东西收拾好眼泪擦一擦后,我也下去手术室外坐了。下到去,女儿已经被推进去进行麻醉中。

手被装上点滴注入器的女儿 ; She is on drips
Nov 21, 2013, day 58 of her, she is going on some blood tests and an ultrasound scanning to confirm if she is BA. The blood result was something similar as the previous one we got from government clinic but the result of the ultrasound scanning was insufficient. Ultrasound team suggest us to go on another scanning called HIDA scan. After some discussion, gastroenterology and surgeon team decided to go on with a minor operation called OTC(On table cholangiography)and will be prepare for the major operation KASAI once she is diagnosed BA from the OTC. Her operation date was set on Nov 25 (Mon). She have to be on fasting for at least 6 hours,2am onwards. It was a very tough night for us, trying to calm her down and make her sleep.

Nov 25, 2013, day 62 of her, nurse came at 9.30am and prepare to push her to the operation floor. I was too busy to kiss her and tell her to be strong and we will be waiting her outside. My heart broke again when I saw them pushing her out, I didn't follow them as I knew that I can hardly stop myself from crying.I just don't want to cry in front of my girl anymore.I am her support and I am suppose to be strong!

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