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.
Monday, December 23, 2013
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.
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？”
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?"
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。
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.
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。
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.
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.
手术后 Post Kasai
女儿被送进了PICU观察，如果情况良好的话，明天/当晚就可以转去普通病房看护。在PICU看了一下女儿之后，我就回家休息了，回家前是千吩咐万吩咐他们如果有什么事一定要联络我们。那天我有好好的睡上一觉。
26.11.13
还特地倒回去kk拿女儿之前的验黄记录而导致迟了到医院。到了PICU时，他们正准备着把女儿转去6楼的手术后病房部。今天的女儿看起来还是有点肿，不过她已经不用靠管子来呼吸了。有点心疼的看到那条在她喉咙的管子弄到女儿的嘴巴看起来干干的。女儿还是有点累累的，哭声还有得沙哑和没力气。没关系宝贝，你已经很棒了，慢慢来。
6楼的手术后病房部跟之前7楼完全不一样，基本上有些父母是没有留在孩子身边过夜的，所以，起初女儿进的床位并没有厕所，是6-7个床位一起的一个空间。没办法，就只能走远一些上厕所了。
照顾女儿的第一晚，就被女儿的微烧37.5度吓得不敢睡觉，一直帮女儿换湿手帕敷额头。一直到4个小时后，护士说女儿降温了，我才放心的睡一下。
27.11.13
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。
28.11.13
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。
29.11.13
早上主医生巡访之后，终于让宝宝开始进食了，从1oz起，不过要留意宝宝会否因为进食而出现呕吐的情况。1oz后的两个小时，没呕吐，宝宝可以喝2oz，再两个小时没问题，就逐渐加到她本来的3oz。不过其实宝宝的胃口还没真正的恢复，她只吃到2oz而已。原本让医生满意的大便颜色，也随着开始进食，恢复了以前的浅黄色。医生说需要时间，可是有看到浅黄色的我们，心都沉了。
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.
26.11.13
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.
27.11.13
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.
28.11.13
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.
29.11.13
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.
26.11.13
还特地倒回去kk拿女儿之前的验黄记录而导致迟了到医院。到了PICU时，他们正准备着把女儿转去6楼的手术后病房部。今天的女儿看起来还是有点肿，不过她已经不用靠管子来呼吸了。有点心疼的看到那条在她喉咙的管子弄到女儿的嘴巴看起来干干的。女儿还是有点累累的，哭声还有得沙哑和没力气。没关系宝贝，你已经很棒了，慢慢来。
6楼的手术后病房部跟之前7楼完全不一样，基本上有些父母是没有留在孩子身边过夜的，所以，起初女儿进的床位并没有厕所，是6-7个床位一起的一个空间。没办法，就只能走远一些上厕所了。
照顾女儿的第一晚，就被女儿的微烧37.5度吓得不敢睡觉，一直帮女儿换湿手帕敷额头。一直到4个小时后，护士说女儿降温了，我才放心的睡一下。
27.11.13
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。
28.11.13
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。
29.11.13
早上主医生巡访之后，终于让宝宝开始进食了，从1oz起，不过要留意宝宝会否因为进食而出现呕吐的情况。1oz后的两个小时，没呕吐，宝宝可以喝2oz，再两个小时没问题，就逐渐加到她本来的3oz。不过其实宝宝的胃口还没真正的恢复，她只吃到2oz而已。原本让医生满意的大便颜色，也随着开始进食，恢复了以前的浅黄色。医生说需要时间，可是有看到浅黄色的我们，心都沉了。
 |
| 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.
26.11.13
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.
27.11.13
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.
28.11.13
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.
29.11.13
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
25.11.13，10am
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。
被证实后的那一刻，我又忍不住大哭起来，老公也忍不住红了眼，终究还是它啊。终究还是要面对之前医生说得有多可怕就有多可怕的，手术的risks。当时我很怕，我真的很怕我会在这个手术中失去她。之后的那几个小时对我们来说，是煎熬。打了通电话通知妈妈，我一直哭一直哭，应该吓坏了妈妈，妈妈一直让我不要哭，伤身体，可是我就是不能不哭。
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。
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."
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。
被证实后的那一刻，我又忍不住大哭起来，老公也忍不住红了眼，终究还是它啊。终究还是要面对之前医生说得有多可怕就有多可怕的，手术的risks。当时我很怕，我真的很怕我会在这个手术中失去她。之后的那几个小时对我们来说，是煎熬。打了通电话通知妈妈，我一直哭一直哭，应该吓坏了妈妈，妈妈一直让我不要哭，伤身体，可是我就是不能不哭。
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 |
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."
Subscribe to:
Posts (Atom)