Monday, December 23, 2013

急诊 Emergency

一如往常的,早上9点把老公叫醒准备宝贝的药,交手到我去休息一下。睡眼蒙蒙,老公叫我起来说要带宝贝去挂急诊。说刚才喂药的时候,其中vit K不小心overdose了,syringe塞着然后稍微用力后就直接喷很多出来,本应要吃0.1ml的,吃多了0.4ml,也来不及让宝贝吐出来,她吞了。


1点多等到2点多,女儿的case其实是排在“emergency”的category那边,可是医生好像“选择性”的跳过。更让我生气的是,我看到了其中一位医生拿起女儿的folder,然后说着“vitamin K overdose?”,问另一位医生的时候,那位医生的回答竟然是“so weird one?never mind, if you not sure you just leave it first.” 。WHAT THE X,那一排non emergency的folder已经没了1半,还是没轮到我们。看着当时的时间2.45pm,心想这个医生一定在等着换岗所以ignore我女儿的case,真的。

果然到了3点多,我看到另一个医生拿起了我女儿的folder,很快的,就叫我们进去检查了。在出来之前,有上网看了一下overdose vit K的后果,怕会照成血变稀,所以女儿是需要验血了。

在等待看医生的时候,被问了几次 “anak u nampak kuning lah” “kuning ke?”,现在的我们会回答说 “ en,dia liver ada problem sikit ” 。还是继续等待着女儿退黄的那一天到来。会的,一定会退黄的。

Monday, December 23, 2013


Rushed my daughter to hospital emergency this morning. While feeding her vit K medicine with syringe, my husband accidentally pushed the plunger too hard and fed her 0.4ml instead of 0.1ml dosage.
As it was in the morning, there were longer queue at emergency. We waited anxiously as being out here longer could mean higher chance of germs infection. The nurse took her weight, and it was 3kg. We were shocked. She couldn't have dropped so much weight. The second time, it showed 3kg again. My husband insisted that they restart the machine, and to our relieve, this time it's 4.8kg, same as last week.
Even though we were in the 'emergency' category, we had waited from 1pm to 2pm. It seemed like the doctors skipped our case. What enraged me was I saw a doctor picked up my daughter's folder, and asked another: vitamin K overdose?, the reply was: so weird one? Never mind, if you not sure you just leave it first. 
We waited so long and felt that they intentionally ignored our case because the doctor was waiting for the change of work shift.
Finally, at 3pm, a doctor picked up my daughter's folder, and very soon, called us. We had done some search earlier that vit K overdose might dilute the blood, so we expected a blood test. Sure enough, they draw her blood, and she cried so much. We were allowed to wait in the car and my husband would collect the blood test result 2 hours later. Again to our relieve, everything's fine and we could go home. 
During the wait, we were asked a few times about her jaundice. And we replied that her liver has little problem.
We will wait for her jaundice to subside, and the day she will be healthy again. 

Thursday, December 19, 2013

第一次复诊 First Follow Up - Surgical

今天是surgery team的复诊日,女儿还是一如往常的不睡觉也不让我们睡 T.T,才睡了3个多4个小时的我们7点就准备好带女儿出去复诊。塞了1个小时多才到达医院。拿了号码之后护士帮女儿称重,才4.85kg。

坐在那边等了1个多小时,终于轮到我们了,结果不是主医生看,只是在职医生。医生说女儿的体重不太理想,不过医生说女儿看起来好像身高拉长了,也可能是这个原因。女儿的肝脏还是属于“enlarge”,不是好的现象,不过比起之前,“enlarge”是维持着之前的size,不是恶化的“enlarge”,又是“need time”。她的肝检验报告也出来了,肝部已经是有伤痕。大便虽然有点进步,可是还是不够黄还是属于不正常的那边。女儿当时一直踢一直笑,医生也说她非常active,所以只要一直留意不要让她感染发烧就好了。今天医生又加了一种vit K给女儿和让我们补药,往后的几个月,女儿还是需要天天吃药。

护士知道女儿是全母乳的,一直说女儿吃母乳以后很pandai的,哈哈。其实聪明不聪明对于现在的我们来说,真的不重要了,最重要还是她能健健康康。其实当医生说她体重不理想时,我问医生我是否应该给女儿喝formula milk,医生的回答是 “ breastmilk is the best for her ” 。

虽然今天复诊的结果有一点点的失望,连之前楼上的医生也说女儿看起来还是黄,不过我相信女儿会好的,我相信她。现在的mission就是让女儿多put on weight 和维持不发烧不恶化。遇到另一位也是有负责女儿的医生说,她们会给至少3个月的时间来判定手术是成功与否,所以我们还是有时间的。

Pray hard,要坚持信念!感恩!

*ps* 跟之前楼上的那位医生讨论了一下换肝的资料,马来西亚不太常做这手术,而且还是需要non living donor。医生也提到,换肝手术前也需要做很多的检验,总之就是就算换肝也未必100%无危险性。(又是听到你心寒寒就是了)

Its our first follow up with the surgical team. Her weight was 4.85kg. Her liver still in enlarge condition. Her liver biopsy result shows that her liver scarred. But somehow we are still too early to judge if the kasai was a successful or not.
She is still my fully breastfed baby, and when I asked if she need to change to her special formula, doctor said breastmilk is the best for her at this moment.
Although she still look jaundice, but I have faith, I knew that she will got better. There is at least a 3months period for judging if it's a success or a failure.

Sunday, December 15, 2013

寒心 Research

照顾女儿的这段期间,我很努力地在找着关于BA这个病的资料,也加入了外国的Support Group里看其他BA孩子的例子。我很想找到在本地拥有BA孩子的父母,可是无论我怎么search都找不到。在外国的support group里,大多数的孩子都已经经历了liver transplant,只靠kasai手术活到大的没几个。

穿针引线,我从朋友那边认识了跟我一样拥有BA孩子的SJ,我很期待地想听她说手术后怎样的状况是代表在康复中。谈了一下后发现,她女儿也已经liver transplant了。做了关于liver transplant的资料收集后发现,一项liver transplant的手术在5年前已经要价SGD150k+了,还没包括之后的复原follow up费用。这数字对于现在的我们来说,无疑是个天文数字。关于liver transplant的资料收集得越多,我越感到寒心。上个月的新闻,一名16岁的男生被诊断只剩下2个月寿命,必须换肝,而换肝的费用高达了66万马币,也是去新加坡做活体捐肝/换肝手术。
其中留言者的疑问,“为什么一定要去新加坡做?马来西亚没有这个技术吗?” “66万手术?骗钱吗?”



I been busy researching for more information about her Biliary Atresia. I joined a support group called Biliary Atresia Network, based of western country. I studied about others BA baby stories, good or bad. I was dying to look for a support group for my own country but I can hardly find any. In the group I was in, most of the BA babies were post-transplant.

I got to knew SJ from a friend of mine, her daughter was a BA too. I was looking to hear about her successful kasai story but end up I found that her daughter went thru transplant as well 5 years ago. While she mention about the cost of the liver transplant, it was around 150k sgd, and its not included the post-transplant follow-up medical treatment and medication. I felt really scared about the amount. I remember that I read some news regarding a 16yo boy who needed a transplant urgently cause his diagnosis of life expectancy was 2-3months. He need 660k ringgit for living donor liver transplant. Some of the comments of his fund raising news , "Why must go singapore for it? Can't just do it in Malaysia?" "660k? scam?"

出院后 Discharged


几天后,女儿生病了。她肚子好像很多风很不舒服的哭,越哭又越多风,额头冷冷可是头又一直冒汗,还开始咳嗽起来。我很紧张,一直犹豫着开风扇还是冷气。之前医生有提过,如果女儿有什么情况的话,要倒回去。我们把女儿抱回去马大医院看医生,差点就走了冤枉路去不懂哪一个部门看。幸好我还是决定上6楼问问看。on call医生替女儿检查了,说女儿没什么问题,也责备我们为什么给她吹冷气(可是之前在医院里都是冷气的,而且我家的冷气也不会比医院冷)。感觉这位医生有点不耐烦我们的紧张,他问我们到底对于女儿现在和之后的情况有多了解。这不是一个能够完全因手术而康复的病,这是个需要long term follow up的,你们不可能expect短时间内看到有什么很大的进展。医生说的话,我是真的懂也真的明白也没再期望着女儿一下子就能够完全康复,只是我们对于照顾这个病还是新手,所以我需要先跟医生确认女儿这样是ok的,没太大问题的,才可以再继续放心照顾她,对吗?被这个医生泼了一身的冷水,可是至少知道了,女儿这样是没太大问题的,如果出现“发烧,肚胀,连续呕吐+每食欲”ONLY,要倒回去。





We got discharged on 2 december 2013. We need to make sure keep the house as clean as possible for her before she is home. She need to be quarantine for the time being, the steriod she is taking will lower down her immune system. She can't even have her monthly injection because of steriod. I made my decision to find a new home for my 4 years old puppy - Terrie. I have no choice. We rushed back to the hospital every time when she seem like getting a bit of uncomfortable.
One day her cough got worst, we brought her to Tongshin and look for Dr Chew. Its really crowded and we need to wait just like any other(no exception for my daughter's condition) because its Saturday. I was so worried that she might get infection. I was unpleasant when others keep looking at my daughter. I guess that I still need some time to accept it.
We brought her back to the hospital paed emergency again when one night she suddenly vomited quite a lot and that scared us. Doctor checked her lungs and said its clear and explained that her vomiting maybe caused of her phlegm.
Her wound were healing nicely.

伤口 The Wound

比起手术的结果,手术后病房部这边的医生比较关心的是,after operation的复原。手术后第3天,医生拆开了包着伤口的纱布,说这样会让伤口更快干水愈合。还是需要替宝宝擦身体,

纱布拆开后,我们更加小心翼翼怕弄伤孩子。宝贝目前还是需要输入止痛药(吗啡)。主医生还开玩笑说我女儿喜欢吗啡 =。="





拆开纱布后的伤口 ; Her wound behind the bandage

Her surgeon is more concern about her recovery after the operation more than the result of the operation. They removed all the bandage at her 3rd day post kasai. They said it will heal faster this way. We need to keep the wound place dry and clean still.

Doctor asked us to carry her more and treat her just like any others ordinary baby.

We are allow to discharge today. But if there is any fever/continuously vomiting/stomach got bigger and hard, we need to return to the hospital immediately for treatment.

手术后 Post Kasai





一早,手术主医生就来巡访了,关心的是女儿排便了没。除了这个,医生说女儿的情况so far so good,要继续观察。这天,我向护士学习了怎样帮女儿擦身体,也第一次在手术后帮女儿穿上了衣服。目前等待的是女儿手术后的排便,观察会不会出现手术后的发烧。当天的晚上,女儿排便了,不过还是之前留下的宿便。

随着女儿越来越清醒,她的哭声也会因为饿而越来越强烈。可是医生还没允许她开始进食,所以我们只能尽力去安慰她。最后一次排便的颜色是很让on call医生满意,可是他们还是需要请示主医生才可以决定是否让宝宝开始进食。他们需要确保里面的接口愈合得比较好后,才让宝宝开始进食。


刚被转上6楼时,未能穿衣服 ; She just got transferred to 6th floor, can't put her clothe on yet

精神有比较好了 ; She look more awake now

让医生满意的粪便颜色 ; The stool which doctor feel ok with
start feeding后又变回之前的颜色了 ; The pale stool is back right after her 1st feeding

She will have to spend a night in PICU for observation.If her condition is good enough, they will probably transferred her out right after a day.

We were late to hospital cause we went back to the klinik kesihatan for her previous reports. When we reached PICU, they were about to transfer her to 6th floor. She still look "swollen" due to drip, but she can breath by her own now. There is a tube which connecting straight to her stomach made her lips look really dry. She still look tired after all, no strength and still losing her voice. But thats alright, you are doing great enough, take it slow baby.

The room in 6th floor is totally different comparing to 7th floor. There is no toilet and you are sharing a room with around 8-9 others patients.

First night taking care of her in 6th floor got scared by her 37.5 degree fever. I dare not sleep but just keep changing her forehead wet towel. Finally the fever came down.

Early morning, her surgeon came and ask if she pass motion yet. Surgeon said that my daughter is doing good. I learned how to clean her body from the nurse and this is the very first time we put her clothe on after the operation. We wait for her to pass motion and hopefully there is no fever for her. She finally pass motion during night time, but the color is still pale as last time.

She is getting more and more awake. She cried louder when she feel hungry. But she is still on fasting. The doctors need to make sure her inner wound heal before she is ready to be fed. Although the stool color did changed to darker.

Her surgeon finally allow her to start feeding. Beginning with 1oz and slowly increase the amount intake and notice if she will vomit after her feed. She can only take 2oz at the moment. Her stool back to her previous color, its killing for us to see the pale color stool again.

Saturday, December 14, 2013

手术中 The Kasai Procedure

坐在手术室外面的我们,起初就一如往常的谈下天,下楼买食物吃,期待着医生说的如果OTC成功清通的话,1个小时后就能看到宝贝了。可是随着1个小时过去后,原来的期待变了。大家都已经心里有数,我女儿可能在进行着Kasai手术。等着等着,终于有一位穿着手术服的人走了出来,说女儿“正在里面做着Kasai手术”,她已经被证实了是Biliary Atresia。她的gallbladder已经硬化而导致液体根本无法pump进去。


手术从早上10点进行到4点半,手术的主医生终于走出来了。医生说一切顺利,女儿的肝脏“看起来”他觉得是还满意,手术会进行得那么长时间是因为他们“take their time”,血管很细所以必须很小心处理。听到这一切后,我心安下来了,没有办法表达对医生的谢意,就一直笑着谢谢他。手术是完成了,女儿在里面被缝针着,估计还需要多40分钟,之后会送进PICU观察。

上楼上收拾一下全部的行李去车后,刚好赶上女儿被麻醉师推出来要去PICU的时候。女儿还靠着管子呼吸,喉咙被植入的直通肚子的管子,插着尿袋,双手双脚都吊着药。麻醉师说女儿stronger than we thought,她很快就清醒还会哭和动。女儿很乖,她真的遵守了约定,“我们等下见”的约定,平安的出来了。

手术后被推出来的女儿 ; She is heading to the PICU after her Kasai
25.11.13, 10am
We were sitting outside the operation theatre waiting to see our daughter hopefully after an hour. Waiting for the good news from surgeon saying that my daughter is not a Biliary Atresia. As time goes by, the smile on my face slowly fade away. There is a voice inside me telling me that she is probably doing that, Kasai, I just refuse to admit it. Till then, a nurse from the operation theatre walked out and inform us that our daughter is inside PERFORMING her kasai procedure. I cried like it is the end of the world. I was so afraid at that moment that I am going to lose her in this operation. The risks of the operation are just too scary for us.

The surgeon came out from the operation theatre at around 4:30pm. Everything went smooth and our daugter is fine, said surgeon. We could have see her 45 minutes later after they stitched up.

Finally she came out from the operation theatre. Her anesthetist told us that she is stronger than what they expected. "You are amazing kid, you made it, you did kept your promise with us that we are going to see each others soon. I am so proud of you."

诊断 Diagnosis

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!

Friday, December 13, 2013

非一般黄疸 An abnormal pro-longed jaundice


由于时间关系,我选择了去同善医院私人儿科检查。我想更了解知道是什么问题,政府医院我有沟通问题。谁知道kk医生所说的“小问题”在周美美医生口中变成了是需要开刀的“大问题”。也是在医生检查后发现,原来一直以来我“认为”是正常颜色的粪便是“很不正常”接近白的粪便。医生说出了一个病名 - Biliary Atresia,当时的我没能记住。脑海里不断闪着的是宝宝需要开刀的信息,眼泪也不由自主的每听医生多说一句就多掉一次。医生当时第一眼看到我女儿说的话是"你女儿看起来已经不是黄了而是青"。女儿当时已经是57天大,如果真的是BA的话,最好是在60天大之内动手术,越早越好。



那一天,我们都很沉重。家婆问我需不需要到其他医院再seek for 2nd opinion。其实在听到医生说如果是BA的话,就必须争取在60天之内做手术后,我就已经不想再浪费多一秒的时间了。


这就是不正常的粪便颜色 ; The pale color stool
Nov 12, 2013, We went back to the government clinic Rawang to check her abnormal pro-longed jaundice. Her blood test result showed that her bilirubin level wasn't really high but still, doctor arranged us to go for another type of blood test and urine test. The result can be taken only on Nov 22. Due to some reasons, I went back to the clinic for the result on Nov 20, and found that some reading regarding her liver function was terribly abnormal.

We went to a private pediatric with her result, and doc there suspect that our girl might be a "Biliary Atresia" baby accordingly on her situation. She has pale stool, look jaundice and dark colour urine. And to treat this, she will have to go thru a major operation which is not 100% success rate and the operation have better successful rate if you do it within 60days of their life, earlier the better. She was in her day 57. I just can't help to stop crying and "think" for what should be done. I am helpless with all these.

I am very glad that we met this doc, she arranged everything with the UMMC Gastroenterology doctor regarding my girl's case. She gave us the directions so that we wouldn't have to waste anymore time.

Nov 21, we admitted to UMMC and got ourself prepared for all the following steps that we will gone thru.

物理治疗 Physiotherapy






Elynna seem to have a little bit of clubfoot issue. Doc said it might be her developed position when she is inside, like a habit. It can be treated by doing some physiotherapy exercises. After the 2 sections of her physiotherapy appointment, we found that our girl actually still look very jaundice when we compare her with another baby who was in the same physiotherapy room. Something is just not very right there.

新生儿黄疸 Jaundice





护士问我是否够奶给宝宝喝,我说有!我以为政府医院是一定要喂人奶的,惊讶的是,护士竟然建议我top up配方奶给宝宝,当时我拒绝了。一直抱着宝宝照灯,到了晚上9点医生巡房时,说我宝宝缺水和体重掉得很厉害“一定”要top up配方奶。就眼睁睁的看着女儿被护士喂了


接下来的2天,女儿只喝了两次15ml的top up配方奶,其余都是把她挂在身上亲喂。到了第3天,医生在女儿的黄疸值下到264.4umol/L时,宣布放人,不过我们还必须keep着去kk验黄。

每隔1/2天,就必须抱着女儿回去kk rawang验黄,每看她被cucuk一次,我就痛一次。幸运的是,母乳宝宝很容易被安抚,抱着她亲喂就可以了。黄疸从第7天的232umol/L下到第15天的160umol/L后,kk说我们不必再倒回去了。我的心当时也安定下来,终于不用再看女儿受苦了。也因为女儿的黄疸,我放弃了坐月子,完全不碰姜和酒,导致我妈妈每看我一次就说我一次。妈妈心疼我,我心疼我女儿,所以,正常。

照双灯 Phototheraphy Session
因为发烧所以进antibiotic ; She is on antibiotic for her fever

小小的手被cucuk得伤痕累累 ; Poor little hand full with needles marks

We got admitted to Sungai Buloh hospital on her day 4 due to her high level of jaundice.She got her very first fever on the same day. She been put under the phototherapy light for 2 days and antibiotic injections for her fever. Discharged on her day 6 when her jaundice level dropped to 264.4umol/L, but we will have to follow up with the nearest government clinic alternately. Its a heart-broken for us to see everytime she suffer from all the blood tests. Finally her jaundice level dropped to 160umol/L on her day 15 and we were told that she can stop from her follow up blood tests. Thanks goodness! 

孩子,终于见面了 Nice to meet you, Little One





听到“可以 push”的指示后,我用尽全力的push。我只知道我尽全力的push了之后hold着久久,
医生就一股的把她放在我肚子上。不知道是不是吸gas太多,我整个人好像blur blur的。就只
傻傻的看着孩子没有哭,“原来你是这样的啊~” “终于见面了”

Sept 25, 2013 our long-waited baby, Elynna was born after the 24 hours pain I suffered. She was a full-term baby and I am giving birth to her naturally, no epidural nor vacuum/forsep. We are just too busy to enjoy the brand new life with this little one.