第三次gastro复诊

2月26号
老实说，这两个礼拜的日子真的有点煎熬。尤其是一直看着她的黄没退反而看起来有加重现象的时候。上个礼拜的复诊，医生已经加重了她的退黄药了。她最近也变得特别难哄，喝奶量也少了将近一半，也拒绝亲味。看到这些种种的情况，我也变得很敏感很情绪化，奶量也，大不如前。

好不容易等到了26号，早上去抽血，下午就回去排队等医生。今天又属我们最后一个回，连药都买不到（关门了）。今天的验血报告如我所料，体重掉了，黄疸升到了217。粪便变白了，尿也茶黄了，肝功能指数也还是高。“现在我们能做些什么呢？” 奶粉一定要很努力的让她接受。不然下一个能做的就是人工喂养，从鼻子放管子直通肚子。不过费用不便宜，那架pump没得租，买它3k，然后每天的disposable feeding bag Rm15，是个长期的开销。医生很感叹的说了，在我国，患这种病孩子的家庭真的负担很重。

医生解释，基本上能做的手术已经做了。现在只能一直monitor着肝脏的进展，调配她的nutrition，还有“等”。等那天的到来，如果情况恶化，下一步就是“它”了。随着马币的贬值，医生提到现在如果要“它”的话，手术费已经去到1m了，如果迟些马币再跌，它就不止1m了。

她几时会需要它？目前连医生都不能给我一个明确的答案。因为肝脏很难说，如果它能保持着现状，可能还可以坚持着几年。不过当中如果发生感染发烧其他并发症的话，它可以很快就发生。

很可惜的是，我们国家虽有仪器来进行换肝手术，但却无法被善于用来救这些孩子。要靠着等待，运气好的时候，还能撑到那时候的时候。

我慢慢学着看开，接受，顺其自然。我会很努力的做我所能做到的。其他的，就等上天的安排吧。focus现在，期望将来。

第二次的gastro复诊 Gastro follow up- 2nd time

12/2/2014
我期待的复诊天终于来了，我好想知道女儿最新的情况。继上次听到所有的好消息之后，我期待更多的好消息。不过这几天，我也发现到女儿好像又黄了点，心也有点不安。其他人更是一眼就看说我女儿很黄，我的心情更是低落得很了。

早上9点，女儿抽血去验的时候，也是没哭，只是不安的红了眼。今天的时间过得很快，什么都还没做到似的，又到了1点。今天复诊的人也不是特别多，也大概等了1个小时就到我们了，今天见新的女医生。女儿的验血报告并不美，黄疸升到了130，肝功能指数表也比上次高。医生提起了我女儿之前的liver biopsy结果，说报告显示她已经有肝硬化的迹象了，而且程度不是轻微，是5/10偏向严重那边。今天的医生要我们有心理准备，女儿看起来是“需要”进行transplant 的。至于几时需要这个手术，医生说我们还有时间的，不会是在她1岁前就需要面对。

今天的复诊很沉重，女儿的体重问题也是现下他们很注重的一个问题，她可能需要到special formula。她无法分解“油”所以她身体无法吸收来增重。

今天在等待复诊的时候，我遇到了一个2个多月怀疑是跟我女儿同样的病的孩子，我给她们留了电话，希望日后可以帮到他们些什么。这条路我走了2个多月，那种无助感我明白，我也是靠别人的鼓励帮忙才撑到了现在。现在换我帮别人了，真心的希望那孩子并不是我女儿的这种，希望OTC能帮到那孩子，希望他只是小阻塞。我也遇到了post kasai 8个月的另一位BA孩子，跟他妈妈请教了些问题，我才不至于糊糊涂涂的以为女儿的黄疸又增加了是件很危险的事情。她跟我说，她孩子的黄疸和肝功能数值一直都是上上下下的。

我也遇到了一位之前给过我鼓励和指导的朋友，她为女儿进行祈祷，我很感激。

Gastro follow up- 2nd time

Look forward to our second gastro follow up because we gained some confidence after hearing positive review in the first. However, these few days, we noticed her skin has become more yellowish again, it worries me. Others commented about her jaundice too when they looked at her.

At 9am, we brought her for blood test. There weren't many people today, so it was our turn after waiting for about 1 hour. Her blood test result didn't turn out well, her jaundice level risen to 130. The doctor also looked at my daughter's liver biopsy results. It shows that there are signs of hardened liver, and it's more towards the severe side. We were told to prepare for the worst, she may need a liver transplant, but it would not happen before she turns 1 yr old. 

Her weight is also a problem because she's not gaining weight. She may need to drink special formula milk, because her body is not able to digest and absorb fats.

We met a family with a 2-month-old who has similar symptoms as my daughter, so we exchanged phone numbers because we hope we can extend help to them should they need it. Having been through this, I can sympathize with people in similar plight. I've also met a mother whose 8-month-old baby is a post kasai too. 

Before and After

好久没更新近况了，女儿一天一天的长大，我也见证着她每一样新的发展。从她学着翻身卡住自己的一边手，到她终于发现怎样把手拿出来。现在4个月零16天的她翻身毫无难度，变成了妈妈我的挑战了，每次要换尿片的时候都要经过激烈的她翻我反。最近她也开始学会了用她的声带了，时不时就喊一下。我跟其他妈妈一样，enjoy着这moment。

之前新年来之前，我还一度的过度紧张可能会因为新年而来家拜年的情况而跟家人闹得不太愉快。后来我提前带女儿去医院了解清楚，她的steriod药真的还有必要吃到那么久吗？毕竟它并不是什么好的药，我也很庆幸我做了这个决定。因为女儿的steriod药只需吃2个月就够了，所以那天之后，女儿正式停steriod了。这个新年，女儿终于可以走出家门，虽然还是需要避免接近太多人，可是也不需要完全关闭在家里了。steriod停止后，我就可以开始编排她之后的vaccination了。医生建议等到她7个月的时候，才可以开始追回她2个月起的预防针。

其实，没消息也算是她的好消息吧。至少，会让人担心的事情，没发生。

伤口已经愈合得很好了，疤痕也越来越淡了 ; Her wound healed good

等了2个多月，我们终于看到曙光了

It's been a while since the last update. My daughter is growing up and I'm seeing new things everyday. She can now roll her body over. It has become a challenge to me every time I change her diaper, because I have to constantly flip her back. She's has even learn to use her voice. I'm enjoying all these moments, just like an ordinary mother.

Earlier on, I was paranoid about the upcoming Chinese New Year because then there will be people who come for visit.

As I have some doubts about the steroid that she's taking, I brought her to hospital to find out if she needs to be taking it for so long. I'm glad I made this decision. Found out that she would only have to take steroid for two months. So from that day on, we stopped her steroid. This would also mean that she doesn't have to be quarantined during this CNY, and we could bring her out, still avoid too crowded places though.

The wound is healing and has become lighter now.

After two months, we finally see ray of hope.