Wednesday, February 13, 2019

Dry And Flaky


Examining the crusted brown flakes closely, my sister exclaimed, “they looked like KFC’s hot and spicy”. She was referring to the famous franchise restaurant chain.

Part of me felt insulted being compared to fried chicken. 



In my view, they bear a closer resemblance to the fried banana fritters that I used to eat in my childhood days.

It was nearly the end of the year 2016, after certain parts of my wounds healed, my skin became dry and were flaking off. The sight of the dried flaking skin would deter my sister from eating at KFC for a long time.

There was a point when I was flaking off a lot of dry skin until my sister suggested that she should collect them and make some weird artwork and framed them. She informed me about an artist who collected fish bones, made them into art and sold them for lots of money.    

I rolled my eyes, “Yeah, and who will buy? They are probably filled with MRSA or other bacteria.  But then again, it would have been a unique artwork.

The nurses would sometimes apply baby oil or liquid paraffin on the skin before bandaging while making sure it doesn’t touch the wound area.  I used moisturiser of various brands as recommended by the plastic doctors.

Later, my sister researched on essential oils and decided that it would be best if we used more natural oils on my skin instead of synthetic oils. That began the start of her journey of concocting a mixture of oils for my skin. We first started with coconut oil as a base oil combine with some essential oils like lavender and tea tree oil. She was careful to test the oils individually to see whether there was any adverse effect on me. Luckily, there were none. We found out there were many types of oils and that the quality of oils depended on the process of extraction. I have even tried oils which I have never heard of before such as Seabuckthorn and Arnica.



With the vast information available on the internet, sometimes it gets confusing on what is good for my skin. Most of the information on burn skin is for the initial burn only. By the time they transferred me to the burn ward, nearly 4 months have passed. The wound areas have turned into ulcers. There were well-meaning individuals who suggested all sort of stuff they read from the internet, but they did not understand that those articles only applied for the initial burns.

My sister got frustrated with all the misinformations and sometimes ridiculous suggestions which she felt was taking too much of her time. I reminded her that these people have good intentions, just that they forwarded stuff without thinking it through. At this age of easy and fast information, people forget that they should be held accountable for whatever they send to others.

Misinformation can indeed be detrimental for a burn patient. One of the nurses at the burn ward narrated to me about a patient who applied garlic on his skin after being discharged from the hospital. He read from the internet that garlic is good for skin. He was readmitted to the hospital as the area broke down.

For a burn patient, it is better to stick with the tried and tested products rather than experimenting on the fragile skin. Best to leave the experimenting to a later date when the skin is much more stable.

Sunday, February 3, 2019

Chinese New Year


Reading the newspaper, it amused me that some people dread the coming Chinese New Year holidays as they are trying to avoid nosey relatives who loved asking questions such as “Are you still single?”, “When are you getting married?”, “Why aren’t you working yet?” etc.

Burn survivors around the world, they have more to cope than just annoying relatives. During the holiday season, the stress gets to them. Most preferred to be alone during festivities.  This is especially so when the celebration involves fire. The smell, sight, sound and feel. Any or all of this combination can cause post-traumatic stress disorder (PTSD) or triggers that reminds them of the trauma.

There was an article in the Star newspaper on the 31st of January 2019 about actress Joey Leong who suffered 5% of second-degree burn on her legs at the set of the movie ‘Amazing Spring’. In the article, Joey admitted that she often makes a hasty retreat whenever she sees a fire. She had concerns about suffering from PTSD.

Image from the Star Newspaper

          I could relate to her feelings. Anxiety arises when I smell gas, hear a loud sound or when plates are accidentally broken.  There was once where my sister stopped for petrol at one of the gas station. The smell of petrol invaded my nostril even though I was inside the car. It felt hot and a panic attack was rising from within. Attempting to calm myself, I repeatedly chanted, “Everything would be OK”. It felt like ages had passed before my sister returned. I hurried her to drive away. Apparently, a previous car had spilled petrol on the floor and the petrol station had failed to clean up the area.

My sister looked worried as she glanced at my direction. She heard the continuous loud explosive crackling sound. Firecrackers were being burnt somewhere nearby. It was the first Chinese New Year since my accident. I looked at her and said, “Don’t worry, I’ll be OK”.

 I am lucky that the sound of firecrackers doesn’t affect me much. Imagine being jumpy throughout every Chinese New Year whenever they are being lighted up. 



           For those who loves playing fireworks, please take extra precaution. It is common to see more people being warded in the burn ward during Chinese New Year. In 2017, I remembered seeing a teenage boy warded during the first day of Chinese New Year. He looked miserable with a bandaged hand.  Spending the holidays in the hospital is definitely not fun.

During this festive season, it is not the material things that matters, rather it is the celebration with family and friends. Take this opportunity to foster closer ties with people and appreciate the moments shared with them.

Saturday, January 26, 2019

Finding Humour and Prayers

Patrick was wailing loudly in my arms. His lips smeared with a mixture of regurgitated milk and sticky phlegm. The scent of sourish vomit on his clothing and face was under my breath. Some part of me wish to turn my face away; I resisted that impulse and continue to comfort him.

His face wrinkled together with lines of distress and fear. He suddenly shook his head wildly,  his back arches while his body trashing around in my arms. I felt a fish flopping like sensation in my chest while my eardrums almost burst with Patrick's tenor.
Crying baby Patrick
"Uh oh. Patrick vomited. Uh oh." My husband tried to make Patrick view this differently.

Patrick continued to cry louder.

"Uh oh. Uh oh."

From a wild tornado in my arms, Patrick suddenly became silent. He observed my husband closely.

Then from a tenor voice, I hear a soft-spoken voice from Patrick, "uh oh."


Patrick saying uh oh, followed by 
myself repeating his uh oh.

"Yes, Patrick. Uh oh. You vomited. Uh oh."

Patrick became more relaxed as he continued to mimic my husband's voice.

I tried to calm down myself by slowing down my breaths. It had been one intense week.

The original title of this piece was "Exhausting Week". And indeed it has been until today.  My husband reminded me to focus not on the challenging circumstances. Instead to make Patrick less stress over his position. That we could influence him on how he manage with his stresses. 

His current circumstances had been daily coughing, which was sometimes strong enough to cause him to regurgitate a mixture of milk and phlegm.  He had been having cough since his last hospital visit. His cough appeared to worsen for the past one week. He has been coughing and vomiting daily for a week. 

In fact, last Sunday (20 January 2019) was the worst - he vomited up to 15 times.

He would end up agitated and sometimes scared. His inconsolable crying would cause him to regurgitate even more. Not always because of his cough that resulted in vomiting. It was often due to his reaction that led to that outcome. 

I would usually try to calm him by singing, breastfeeding, giving words of comfort among others. Not often he could response favourably. Sometimes he would cry even more to emphasise to me he was not feeling good. However, that usually ended him in regurgitating more than once.

I had been torn whether to bring him to the hospital or let his immune system strengthen itself against this cough invaders. If he had been having fever for a few days, then the decision would be easily made because concerned that Patrick may have cholangitis (an infection of the liver through the intestines). During his coughing, he did not have any fever at all. It's more of inconvenient and the tiredness that fell upon Patrick after regurgitation. He did not appear to have any difficulty of breathing as well. 

Since his last hospital visit, he lost weight. From 8.2kg to 7.75kg ( 20 January 2019). I became very alarmed and discussed with my husband on this. He wanted to observe before going to the clinic or hospital. For my son is still too young for him to have any medications. And medications could cause his liver to be further affected. 

Because of the sleepless nights of Patrick waking up with cough and throwing up phlegm and milk onto the bed, we had to change his clothing and the bedsheets. It had been both an exhausting week for our family; I would try to console Patrick while my husband would change the bedsheets. 

When Patrick feels stressed, he may scratch himself even more and sometimes this drew blood from his ears. Occasionally when I see blood, I would feel stressed on this. Not because of fear of seeing blood. More of concern can I able to stop the bleeding. 


I felt this represented how Patrick is feeling. The never-ending
coughing and vomiting. He wants to move forward yet how when
appeared stuck in his circumstances. 
Altogether, we were both distressed, stressed and even traumatised to some extent.  I almost fell sick at least three times in one week. Each time when I had that strange sensation of falling sick, I quickly popped three 500mg vitamin C. Then I would meditate and do Qi breathing ( a Qigong breathing technique) with a strong focus to myself, "Don't get sick! I cannot help Patrick if I fall sick. So, don't get sick!!" It appeared to work, because within a few hours I felt better. 

The 'uh oh' usually work with Patrick. When it did not, I would try to sing to him. If it resonates with Patrick, I would feel him as if melting in my arms. His cries stopped, his body tension leaving in stages.

I did tell myself if after January 20 2019, if Patrick's condition worsens, I would insist to bring him to the clinic or hospital. 

One night, I could not take it anymore. During one of the early morning sudden cough that woke up Patrick and myself, I prayed hard. I said to let me take his place instead. To let me be the one to vomit instead of Patrick. To let me be the one to suffer instead of my son. That I cannot take it anymore seeing him in this way.

I was holding Patrick, patting his back. Offer my breast nipple to him, which he would latch on, seeking for comfort. 

"Don't be silly."

I heard this clearly. Although I was tired, my eyes barely opened. Exhaustion clung onto my skin like an elephant glue. 

"Please, please... could he have a break??? Stop vomiting for one night. Let him have some good rest...pleaseeee."


I felt like this lady, desperately seeking for help.
I thought I felt something. I was not certain. The tiredness was more pronounced in me than anything else. 

My eyes immediately shut to dreamland once I put a sleeping Patrick back to bed.

He did woke up two more times. With no vomit. I managed to put him back to sleep much easily than the usual. 

When I woke up, I was surprised to find myself experiencing a restful sleep. When Patrick woke up with coughs, he usually takes some time to settle down. This time, he could easily return to sleep, to my surprise.

I remembered pondering... did God answered my prayers? Was it a dream? Who said, "Don't be silly." It's a voice that sounded calm and assured. I know it did not come from me. Not from my husband as well. There were moments I had dreams that appeared vivid and almost real. Was that it? 

All these questions in my mind. Yet I cannot deny this - after I prayed ( for real or in my dream)... Patrick stopped vomiting afterwards. ( for two nights it was so. ) On average nightly he can vomit up to three times. Coincidentally, his coughing appeared to recover step by step. His vomiting episodes became lessen as well. 

Today, 26 January 2019, Patrick at a much better state. His weight had regain slowly to 7.83kg. I am certain he would regain what he had lost and more. Though he still has his occasional cough, it is obviously seen he is indeed recovering. His immune system is fighting back to overcome this. 

Both myself and my husband trying to help Patrick have a different attitude to his suffering. We won't deny him in voicing up his distress and fears. He should not suppress nor repress his voice. However, we would not wish for him to perpetuate this suffering as well. If he starts to develop a negative mindset, it would hinder his healing. I always try to make him understand that some vomiting episodes would not have happened if he did not keep re-emphasing his discomfort. To make him understand the cause and effect when he allowed himself too long in venting his suffering. 

He may be a young toddler, almost 16 months old. Time and again he has shown he has this intelligence which he would understand so long we make the efforts. 

We are not belittling and dismissing his suffering. We acknowledge his suffering and hope he learns not let that be the main focus. I remembered when my due date was coming, I was in much physical and emotional distress. The daily physical pain, the times when I found myself painful to walk even a step, I tried to laugh at myself by referring to myself as a walking penguin. I don't dismiss my suffering and discomfort. I acknowledge them. I find when I look at this in a different light, I don't feel as emotional and as physically taxing. 

I am thankful I have a husband who is supportive and reminded me not to focus on the negatives despite the suffering. It is very easy to succumb to negative thoughts and feelings when we do not feel good. Yet if we emphasised on it, like how I noticed of Patrick - the subsequent vomits was more of self-induced than the actual source of the suffering. 

You will soon recover from this coughing, my son. Believe me. Try not to focus too much on the suffering, ok? Mummy and daddy is with you. We understand. We will try to make you feel better and stronger. 

We will raise you up, to face the sun. Light shall be with you. God be with you.




Friday, January 18, 2019

Faith


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. 

I wrote my reflection in a poetic manner that summarised my journey in meditation from mid-November 2009 to end of January 2010. How meditation assisted me to have a breakthrough, breaking through the chains of negativity that locked me within a vicious cycle of anger and despair.

In 3 weeks never-ending wreckage,
Of mind, heart, body spirit and soul
Darkness step within till almost become one
Light fades as pressures mount.
Love and Light disappearing into the night.

Another 3 weeks a constant struggle,
Left or right, light or dark,
Getting constantly in a muddle,
Why fight when impulses run high
Tempting to walk on a crooked road
of Chaos and shadows.

In the next 3 weeks salvation returns,
Remembering of love and light
Darkness may be strong but Light is of might
For a beacon would reveal potential and future
Unlike darkness thrive on destruction and urges.

In the following 3 weeks,
Darkness departs, paving way.
To sunlight, grace and harmony.
Learning once more to be whole.
For Love and Light to be my reality.
( February 5, 2010)

All these experiences and hard work prepared me well years later 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

"Anus."

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.