Friday, January 18, 2019


A few days ago, I was invited by my friend to a Christian life group sharing. The group leader referred to a passage from the bible about a man named Jairus whose daughter was dying and he asked help from Jesus to save her. When Jesus arrived at the house, he did not let anyone in except his disciples and the girl’s parents. Jesus said “Don’t cry; the child is not dead-she is only sleeping!”. There were some people who made fun of him. Jesus called out to the child, and she got up.

           What touched me about the whole story is Faith.


         During the time that I was unconscious in the ICU, my condition was critical, in a medical induced coma with nearly no chance of survival. The doctors had informed my family to prepare for the worse.  My dear sister tried to restrict the number of visitors. There were relatives who wanted to say their goodbyes. She struggled to prevent them from entering as she feared that I may pick up their words and thus give up on life. Sometimes she succeeded, sometime she didn’t.  Luckily, I was blissfully ignorant and didn’t hear any news about myself on the brink of death. It surely would have impacted me mentally.

         Even though my condition looked bleak, there were many people from different races and religions; Muslims, Christians, Hindus, Buddhists and Taoists who prayed for me. They prayed according to their own faith and belief.

            One of my friends, Cordelia Lee, rallied up through Facebook for prayers on my behalf.  Many people including strangers agreed to pray for me. Some even fasted and restricted their diet in hope their prayers would be answered.

            A friend of mine, who is a Taoist, conducted a special ceremony for me with a lighted fire on oil and prayed for me. He took care of the fire making sure that it had a continuous supply of fuel without being extinguished; throughout my nearly 4 months stay in the ICU.

One of my teachers, with some of my previous class mates from a course that I attended a few years before my accident, raise funds and release animals on my behalf. It was their belief that the act of releasing all sort of creatures will help to save and prolonged my life. 

           It was indeed touching to find out about all this after I was in much better health. So much so that I cried listening to the stories told by my sister or reading my Facebook messages for the first time.

           I am thankful and appreciative of the effort that they made and the faith that they had.  When medical science couldn’t do anything further anymore, in time of difficulties, their faith helped to sustain me.   

          There are people in this world who insists that their religion is the only true path or impose their view on others. Some are close minded towards other religions. During my stay in the ICU, people of all race and religion prayed for me. I personally don’t believe that God is only there for a particular group of people, race or religion. I truly believe : God is there for all.   

Tuesday, January 15, 2019

Roller Coaster Jaundice

There were times I find life can be a roller coaster. Of sudden turns, drops, highs and lows. Frankly, I never did like roller coasters, unlike some of my friends. I do not like the unknown and things that seemingly go out of control beyond our hands. For a long time I preferred control. Control of my emotions. Control of my finances. Control over my planning. It is to be A, B, C. And that is that. If it could not go according to my sense of control, I would get upset. Even then I would control that emotion itself. 

Roller coaster of life
It was until I had my spiritual awakening years ago which led me to realise we can plan all we want. However, not all can happen to our plan. With lessons of life, I learn to accept that some things cannot be changed while some can be influenced to have a higher percentage of a positive outcome by adapting to these sudden new changes. A good example would be a decade ago due to an intense trauma that happened to me,  I could no longer able to manage my mental and emotional state. 

I was fed up with that state. I was angry. I was fearful. I kept thinking life being unfair to me. My thoughts were rushing like bullet trains that had no specific destinations. I was in a constant state of anxiousness that affected my physical health and sleep. There was no "off" button in me to rest at all. I was constantly blaming others for causing me to be in this position, for not supporting me in my time of need. I even blamed myself for being weak and stuck. 

Why, oh why I cannot get off from this runaway train of life. I felt anytime I can be crashed and burnt. Which I had due to that trauma I went through. The aftermath of it came with a sense of helplessness and hopelessness that made me felt there was no way out from that situation. I published these experiences of mine into a memoir last year. 
This represented how my crashed and burnt trauma a decade ago.
If I allowed myself to give in to these new state of circumstances, I can be stuck like this until in my 70s or 80s. That thought scared me enough to want to do something about it. I decided to stop putting blame as a focus. Instead be a solution provider. I realised I need to do something first on my mental and emotional instability. I did try the usual suppress and repress method. However, I found it no longer worked as before. That's when I started taking meditation as an answer to my position. 

However, there were moments I was very impatient because I could not control the outcome. I wanted fast results. Eventually I learn to let go and let the process develop. I had a roller coaster ride of impatience why the results did not go in accordance to what I want and acceptance that everything takes time to develop. Before I knew it, meditation is a way of life for me. 

All these experiences and hard work prepared me well when I suddenly have another life experience that was intense as well -  my son's biliary atresia condition. Without these, I could not have the strength and the awareness of what I can do and what I can't.

The recent blood test results showed a sudden big leap of bilirubin of 215 (January 2, 2019) to 295 (January 8, 2019) was shocking and worrying. 

Last year, Patrick's bilirubin levels usually raised step by step, and hardly downslide. The pattern usually a gradual uptrend. 

Myself and my husband discussed what could lead to that. My husband analysed that when Prof Ng suggested going fully into Peptamen Junior 100% ( on January 2, 2019), we tried as per suggestion. This suggestion came about because observations Patrick has been steadily gaining weight. So, why not fully into Peptamen instead of 80% of it. 

However, we slowly noticed his stools became more pale as time went by. By the time his blood test was taken a week later, his bilirubin went to a big leap of 295. 

My husband decided to return the practice of giving Patrick Peptamen at 80% while at 20% Annum with MCT powder. This time, my husband added a small volume of DHA into each feed of Peptamen (because Peptamen Junior doesn't contain DHA). 

We shall observe what shall happen next. We noticed after almost a week, Patrick's stools starting to show more colour. We hope this is a good sign. 

By the next blood test we shall know whether this assist Patrick. 

We will keep on trying, striving the best for you, Patrick. Come what may, this mama will be the tree of life for you. 

I shall be your roots of strength, stability and personal growth. 
This mama ain't quitting on you, no matter what challenges 
come our way where comes to your health challenges, Patrick. 
This photo was me taken almost ten years ago.    

Saturday, January 12, 2019

Coughing And Bleeding

When I saw Patrick's stained fingers, I observed closely it was blood. I assumed the stain came from his ears again. I observed - no wound. I checked on his arms and legs. No wounds as well. I was puzzled where the stain came from. Then I had a sudden thought - check his diapers.

When I saw the bloodstain on the diapers, I panicked and called my husband to come upstairs quickly. 

When he reached the room, I told him Patrick is bleeding.

"where?", he asked


I pointed to his diapers and then his anus stained blood. 

Patrick's blood stain on his diapers.
It had never happened like this before. Usually there were droplets of blood together with his stools. Even that rarely happened. 

"Is it starting?", my worried thoughts came. When I glanced towards my husband's face, he too have similar thoughts. 

"It" refer to liver damage.

My husband advised me to clean up his anus. After the blood stain was cleaned, my husband took a closer look. 

"There is a cut near the anus hole."

I gave a sigh of relief. 

Before this heart stopping experience, Patrick had been fussing on occasion especially after he coughed. He had been coughing since his last doctor appointment. Whenever he coughed, he would get agitated and sometimes he cry out of frustration. When the coughing became too strong, it caused him to vomit as well. 

Last night was a restless night for us both. He would sometimes woke up from sleep due to his cough. Twice he vomited because of his cough.

I would check his body temperature now and then to ensure he does not have fever. And if he do have fever, to ensure it did not go beyond two days. Otherwise he need to be hospitalised for monitoring. Because his fever may not be just a normal fever but an indication of cholangitis, a bacterial infection of the intestines. The symptoms would be fever, acholic stools and positive blood cultures. Since his diagnosis of Biliary Atresia (BA) in 2017, he has yet to develop that symptom.

This is my life today - monitoring of Patrick, to see whether he has newer symptoms.  Occasionally it gave rise to panic like today's experience. There were moments my husband had to be a voice of common sense, which is to investigate the source instead of jumping to conclusions. At times I have to be the one to offer that when my husband got too worried himself. 

This experience is teaching me not to panic first. I am to remember to breathe first before giving in to panic and worries. To be present of each moment. Investigate the source. Then take the next best course of action for Patrick. 

Remember to breathe during sudden changes of Patrick's symptoms

Wednesday, January 9, 2019

Blood Test Results

I saw the notification of Prof Ng's email. I quickly checked for the blood test results; I was in two emotions like last week; happy and in a worried state at the same time.  

A week ago, the blood test results revealed bilirubin levels at 215 ( his jaundice a big drop from 275 levels of November 2018 reading) and INR was at 5.7. The unusual high levels of INR was a concern because it may be a sign of liver damage. 

Today's reading revealed bilirubin at 295 ( what?!!) and INR at 1.3, which is still not within the normal range yet. The normal range would be at 1.1. That meant it was a deficiency of vitamin K after all. However, his jaundice went up a big leap. It was also the highest level of bilirubin reading until today.

If you could see my face now. 

speechless at the blood test results
Prof Ng did not mention in his email to start preparing for a liver transplant yet. So, Patrick is still under observations. His assessment when a baby/toddler should go for a liver transplant would be dependent upon abnormal bilirubin and INR reading. 

Prof Ng educated us based upon previous babies cases, cases where they must go for a liver transplant was based upon a few factors. Their level of bilirubin was very high ( one baby was above 500 in bilirubin reading). Their quality of life has been affected (loss of appetite, very fussy, fatigue, ascites among others) and they were starting to lose weight although they were on special milk formula. To Prof Ng's observations, Patrick has been slowly and steadily gaining weight. In fact, his weight, his height and head circumference has reached to a normal range for his age group. (Finally! We have been waiting for this day for a long time.)

Prior to last week's blood test, Patrick's stools colours was starting to be under the normal range, identified as pigmented. 

Colour of the stools within normal colour range
Colour stools chart
However, we noticed his stools were starting to look pale again a few days before his last week's medical appointment on 2 January 2019. No more of the darker coloured stools as before until today.

Pale yellow coloured stools
Prior to January 2 appointment, Patrick appeared to be getting less active. I did notice his eyes appear to look more tired than his usual sparkly eyes. He was crawling lesser and refuse to climb up the staircase.  After he had the vitamin K injection, his activeness returned. His talkativeness level and crawling appear to be back to normal. Based upon observations, likely would be indicative of vitamin K deficiency. However, it would be better to confirm by the blood test than by speculation. 

My husband and myself would analyse on possible reasons why the different levels of jaundice in one week.

The decision for a liver transplant to be postpone again. 

Tuesday, January 8, 2019

You Can Do It!

His lips quivered while he judged the height difference between the kitchen and the dining hall floors. The kitchen floor level was approximately 2.5 inches lower than the dining hall floor. 

Patrick's eyes looked uncertain while he made a frustrated sound at me. I was sitting on the dining hall floor, gesturing him to come near me. He was on all fours on the kitchen floor. Then he positioned his two hands onto the dining hall floor while the half of his body on the kitchen floor. He raised one leg in the air, uncertain on how to position his leg to the other side. Then his leg came down. He sat up, stared at me with a protesting whine.

"Don't give up, Patrick. You can do it."

I have been trying to empower him with positive songs.

Song Title: Never give in
Written and sung by me

He placed himself on all fours again. Patrick tried to make another attempt. His body language was saying, "I can't". Again, he sat down with a protesting cry. He gestured his hands to me, asking me to carry him.

"Patrick, don't give up so soon. You can do it. You must keep trying. No matter what difficulty you face in life, you must not give up. You can do it. Try, Patrick!"

By then, my husband sat next to me. Both of us kept on encouraging him to keep on trying.

Patrick looked at both of us. 

Then he positioned his body again on all fours. Although he still has this lacking in confidence demeanour, he felt encouraged to make another attempt.

He positioned his two hands first onto the dining hall floor. His raised leg in an attempt to go over to the dining hall floor. His leg was hanging in mid air for up to two seconds. Then down his leg went, onto the other side. His entire body finally moved to the dining hall floor.

He sat up with a sunbeam smile. We hugged him and acknowledged his courage.

Since then, he lost his fear of climbing over the difference between the floor heights.

I wish to encourage him to have a non-quitter mentality in face of adversities. For his disease will come with challenges. 

I believe in you, Patrick.  You can overcome anything. You can do it!

Come what may, Patrick is ready for you!

Monday, January 7, 2019

Encouraging Words

That one month hospital stay changed myself and Patrick forever. He became more sociable and enjoys engaging with people when he feels safe to do so. He became more animated and talkative as well. 

For me, I observed the silent strength of mothers in taking care of their babies with special care needs. I do not hear them complain of the situation they were in. Expression of worries and fears were shared but not of why did it happen to them. In fact, I could observe they made the best of the circumstances for their babies even though it can be at their expense i.e. sleepless nights, worrying whether the treatment would work for their babies, worry whether their symptoms would develop into something worse in accordance to the medical literature they have read or prepared by the doctors.

mothers and babies overcoming challenges together
I am able to empathise on their state of their mind and emotions; I hope I can do something to encourage them in their circumstances. I specially noted how the mothers smiled and of a happy body language when I gave their babies a hand-sewn doll. 

I decided on occasion I would do just that; to bring a little cheer, a little smile and a little encouragement to help them feel better. A doll for the young ones, a note of encouragement to their mothers.

My original idea was a written note of encouragement until one day I came across this service provided by Ann Usha. Her business involved motivational gifts. I remembered her post in one mothers' group in Facebook where she highlighted a client of hers who bought magnets as gifts of encouragement for cancer patients.

I decided to approach Ann on her service. What lies behind her business is not just business making but a passion in spreading love and encouragement. 

I asked her what inspired her to start a business on motivational gifts.

She shared:

"I was a person of low self confidence through my teenage years.  For a very long time ( I ) was like this till I got involved (in) church and became a praise and worship leader. From there I got myself confidence and with the negativity I see in the world and working with children, I told myself nobody must feel small of themselves ever and be like me. Thus the birth of motivational quotes to help lift anyone."

"Now I tear when I see anyone with low self confidence. Been there. Don't want anyone to walk that path."

"...what further motivated and gave me an extra boost of confidence is my work at Caring Moms group. How I observe each mom inspire and motivate the my passion and work for motivational quotes brought smiles..that's priceless."

I felt touched by her motivation. Sometimes I see some who would tell me grand ideas of success of themselves, of climbing corporate ladders, earning a million by a certain age. I remembered one who declared to me he would earn this amount of money and he would own a helicopter one day. It was a lot of me, me, me. 

I hardly hear of those who start a business because of wanting to make a difference. Sometimes I do hear of those who claimed to want to make a difference yet when observe closely they are doing it to make themselves feel good and for self glory. 

My husband have collected the magnets from her yesterday. The quality looked good. I was impressed Ann managed to get them ready earlier by a day or so. 

Motivational magnets ordered from Ann Usha
I hope the mothers of the ward would like them. For their babies, I see how many dolls I can stitch. I hope by my small gesture can help liven up their stay and ease off their discomfort temporarily. Everyone needs love, encouragement and support. Even me. I will always remember when I needed such, there were a few who step up and supported me in my vulnerability. I shall pass forward this torch of Light and Love. I hope Ann's business would continue to touch many hearts. 

One Of Those Mornings

It is one of those mornings today. I slept on average 2 hours earlier. For some reason my son was unusually hyper in the early morning. He slept last night by 11 pm. Then woke up two hours later. He kept on fussing and fussing. I could tell he has this energy that need to be expended.

Last year I would try to put him back to sleep by rocking him in my arms, singing to him. When he was in that hyper state of energy,  these methods usually did not work. He would still be up during my attempts two hours later. His wide eyes staring at me, wanting to wiggle out from my arms and wanting to do something more.  

Today I learnt to let go and make peace whenever he is in this state. For one thing, Prof Ng has shared with me that some Biliary Atresia babies and toddlers do not have a normal sleeping rhythm because their liver is out of rhythm, so to speak. 

There were rare moments he slept through the night, from 11pm till 8 or 9am the next day. Oh, how rested I was. Although he may wake up a few times in the night, but he can be easily soothe back to sleep.

This early morning however, he wanted to wake up and move! So, I allowed him to crawl over to the chair and cabinets because he used them as a support to stand. He would talk to me. I would sometimes try to understand him. Sometimes I would say, yes, yes. Sometimes I would be honest and tell Patrick - I don't understand you. I am sorry. Usually that would either cause him to "explain" more in baby talk or he gives me a look and turn his attention away to toys among others. 

When he finally went to sleep by 5ish am today, I finally dropped into dreamland until I woke up by 7.30am by his cries. When I tried to soothe him back to sleep that's when I noticed one of his ears were bleeding.

Photo taken today of my attempts to try to stop his bleeding in his ear.
His jaundice induced itchiness can sometimes caused him to scratch until he injured his skin. Usually would be the forehead and ears area. This morning, it was one of his ears. Quickly I tried to stop the bleeding. 

After attempting a few times of stopping the bleeding (I timed myself 2 minutes on two attempts), the bleeding still continued. Then I tell myself - just go by feeling or instinct how long I need to press the tissue against that wound. So, I started reciting seconds aloud. Until I reached 197 seconds, then I felt I should stop. When I observed the wound, no more blood seeping out. Thank goodness.

There were moments his jaundice can cause intense itching (pruritus). It can be so bad until his sleep was affected. His teary eyes with cries to help him feel better always put me into action. I would massage his body. I may use a baby moisturiser on his body. I would sing to him. I assured him, "Don't worry. Mummy will try to make you feel better."

Sometimes the methods I tried don't help. I would then read to him, or encourage him with toys and so forth. We both would wait until his sudden rise in bilirubin in his bloodstream lessen.  Then he no longer would scratch. We did have a medication prescribed to help him ease off the itchiness. However, my husband mentioned that using too much of that would contribute further to deterioration of the liver. Until it affected his sleep, then we used the medication. Luckily, that state rarely happen. 

Today one of those mornings, my sleep much affected. More than a year of this. Sometimes I could feel exhaustion clung onto my skin like an elephant glue. My mind in a state of tiredness that made me incapable to have a proper thought. I would always make a joke to my friends when I found myself reach to an exhausted state that I have become zombie-fied.

Zombie Mama....
Luckily I had time to meditate and pray while Patrick sleeps. Yet if sleeping more essential rest than meditation and prayers, then I would listen to my body and sleep away.

Earlier I manage to have at least half an hour of meditation and prayers. Although I no longer felt as exhausted, tiredness still a part of me now which I find it manageable. Luckily I no longer work. How could I when my daily average of sleep is three hours? I marvel mothers who juggle work, marriage and family together. 

Looking at my son sleeping soundly now, my heart opens like a sunflower facing the sun. No matter how tired I can get, seeing him with a rested face is a reward for me. Sleep well, my son.