第三次急诊 3rd Emergency

1月18号，
最近发现女儿在大解的时候会哭得很厉害，好像很痛似的。今天大解的时候，还给我看到大出血丝！把尿片拿上，又往急诊医院跑。今天急诊部特别多人，register好量好体重后，我也不让女儿留在那边等了，带着她去车上等。
1个多小时后，终于到我们了，一轮嘴的告诉医生女儿的大便时水时硬，忘了提醒医生她做了kasai手术，听到医生八只耳朵。医生是在要检查她肚子的时候，一拉开衣服才知道了，哦，手术后的，难怪我说她明明是fully breastfeed的，为什么大便会硬的呢。
医生检查后说可能只是小小的外伤口，不是内在出血，让我们去拿涂外伤口的药。医生说我女儿看起来真的不像一般做了kasai手术的，她看起来很开心很active很健康，不像以前他在其他医院接触过的同类病童。
医生简单的一句话，可以让我这个妈妈开心很久。
继续加油！宝贝

Tuesday, January 21, 2014

3rd Emergency

18.1.14

Rushed to hospital emergency for the third time because there was blood in her feces. There were many people at emergency today, so after registration and weight measurement, we waited in the car.

After waiting for more than an hour, it's finally our turn. As we were in panic, we forgot to mention that our daughter has undergone kasai surgery, it left the doctor confused. Only when the doctor pull up her shirt and saw the wound, he understood what we were trying to say. 

After checking on her, the doctor said that it should be due to small external wound, and not internal bleeding. 

He remarked that she's so active and happy, and doesn't seem like one who has undergone the kasai surgery, as compared to some other children he had seen before. 

And this casual remark truly cheers me up.

Gastroenterology复诊 - 1st time ; Gastroenterology follow up- 1st time

8.1.14
终于等到了gastro team的复诊天，很想知道女儿的进展。6点多就爬起来准备，到医院已经8点多，已经排在挺后了。跟医生的appointment是定在下午2点，早上需要先抽血去检验。今天女儿的心情特别好，抽血的时候完全没哭，就蠕动一下而已（因为被被单包着）。一如往常，抽了3瓶血。抽完血还早才9点多，就决定带女儿去剪头发，避免人潮，一开店就去剪就对了。可能抽完血比较累吧，一路上她就熟睡到目的地我叫醒她为止。

我们3人都理了发，回我家休息一会就倒回去医院再排队见医生。等了1个多小时，终于见到Dr Ng了。女儿的黄疸指数也明显下降了，虽然医生说她的进展有点慢，可是也不算太差，我们还有时间，再给点时间女儿，keep着follow up。总算开始看见点希望了，虽然先前看了不少让我心酸的例子。

女儿啊，要再加油！妈妈还要陪着你走很长很长的路，知道吗？


Gastroenterology follow up- 1st time

Tuesday, Jan 21, 2014 

8.1.14
Finally the day of follow up with gastro team, we're so eager to know her progress. Our appointment with the doctor is at 2pm. We woke up at 6am to start preparation, and arrived at hospital at 8am to have her blood draw first. She seemed to be in good mood, she didn't cry while drawing her blood. It's all done at 9am. We decided to bring her to hairdresser as it's the shop opening hour, we could avoid the crowd. Perhaps due to the blood draw, she fell asleep and sleep all the way till we reached our destination. 
All 3 of us had our haircut and we went home to have a short rest before going to hospital again. After an hour's wait, we finally met Dr Ng. Her jaundice level has gone down. Her progress might be a little slow but an optimistic one. We have to give her a little more time, and keep follow up. Finally some good news that made us hopeful again. 
My dear child, you can do it. We have a long journey ahead of us, and I will stay by your side. 

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。

经过上次的经验，这次我们就把stroller也拿下车了，所以我能推着宝宝去register。比起上次半夜挂急诊，因为是早上，挂急诊的人也多了，又是担惊受怕的在等（每在外面多呆一秒就多一秒受到感染的可能性）。量体重的时候，被吓到一下，体重器显示3kg，没可能掉那么多，再量一次，也是3kg。老公很坚持叫她们restart那个体重器，幸好，restart后恢复正常，4.8kg+，跟上个礼拜一样。

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。
结果女儿还是被cucuk拿了3瓶风沙丸罐般大的血，哭得好惨，怎么哄都没用，唉。跟医生说了我的顾虑，被允许在车上等，两个小时后爸爸去拿result就可以了。幸好result出来，一切ok，可以回家。

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

Emergency

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. 

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.

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？”

听说Selayang医院是有换肝手术，不过好像是需要已经往生了的捐赠者，并没有提到能够活体捐肝。我心里想，如果有，难道他们会不想在这边动手术吗？你我都心里有数我们的国家是怎样的。现在的我们只能祈祷/拥有信念，我们的女儿不需要走到那个地步。

对于BA这个病，根据统计，做了kasai手术后90%的患者将会经历换肝（时间迟早），只有7%的是能靠这手术活到最后。我希望，女儿是那7%里的其中一个。

https://www.facebook.com/sfipibgmed

http://news.sinchew.com.my/node/332798
希望这位男孩换肝手术成功，远离病痛。


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

出院前医生交代了一切，因为宝宝其中一种药物steroids会降低宝宝的抵抗力，所以在家休养的那一段期间，她都必须与外界隔离。家里需要保持干净，每次在碰宝宝之前都必须洗手，宝宝所有的东西要常更换和好好的消毒。也因为steroids，宝宝在6个月内都不能接受疫苗。
每天早晚都比较按时吃药。医生说在用药的这段期间如果女儿发生细菌感染的话，后果可以变得很严重。也因为这样，我把养了4年的terrie狠心的送走了。在帮terrie找新主人的那段期间，有人问我为什么要把好像自己孩子的狗狗抛弃，忍心吗？我不想解释，因为这种痛只有经历过的人才懂。

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。

女儿的咳嗽严重了，不得已又把她抱去同善见周美美医生。星期六看医生，免不了需要排队，医生也没说我女儿可以先看（其实医生是知道女儿的情况，不过我也明白一视同仁这道理）。等看医生的哪一个多小时，我能离人群多远就多远，等那么久就担心那么久。其他抱着孩子的妈妈/婆婆们看我女儿的眼光，让我忍不住用“瞪”的回应。是的，我承认我当时还没真正放开心接受。周美美医生有稍微安慰我们的说女儿看起来没之前那么黄了，体重也没掉，她的咳嗽可能是因为伤风引起，也给了我们涨风药。

某天晚上，女儿吐了，吐得满地，从没有吐过那么多，我们又吓得立刻抱她回去马大挂急诊。儿科急诊医生检查了女儿的肺部，说肺部ok，只是喉咙有点发炎，按按宝宝的肚子，没肿胀，没影响。医生解释宝宝咳嗽没药吃的，就算有药，我宝宝也不能吃，她的肝受不了那些药。最重要的是，宝宝没发烧。这位医生让我们尽快回家，因为呆在那边越久就越容易感染病毒。也跟这位医生确认了，宝宝是可以睡冷气（不能太低温），要保持湿度。冷气房有它的好与坏，好的是，细菌比较不容易滋长。不然睡风扇的话，宝宝一直流汗会更容易产生细菌。

宝宝的伤口开始慢慢结疤了，虽然大便的进度还是有点龟速，不过比之前原地踏步，好很多了。

复原得很好的伤口，医生说迟些就变白色疤

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，
伤口部分的处理需要轻轻的以点缀的方式，然后用干布点干。

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 =。="

因为要帮女儿换衣服的关系，护士也教我怎样把女儿“抱”起来。之后我也自己慢慢的把女儿“抱”起来，让老公他们换床单/铺床。

伤口慢慢一天比一天看起来好（没红肿，只是微红），我也越抱越大胆了。问了医生，本来以为需要瓶喂女儿一段时间的我也亲喂了。

止痛药慢慢的减量到不用，女儿手上的点滴输入器也被拆得7788了。医生让我们做回跟手术前一样，要多抱她，就跟平常一样。

2.12.13
医生说我们可以出院了，两个礼拜后，在倒回去检查伤口，而Gastroenterology的复诊则在下个月。医生说如果期中发烧呕吐肚子肿胀的话，要立刻倒回来。

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.


2.12.13
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.