Posts

Showing posts from January, 2019

Finding Humour and Prayers

Image
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.
"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 beca…

Faith

Image
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, som…

Roller Coaster Jaundice

Image
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. 


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 …

Coughing And Bleeding

Image
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. 
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."

Blood Test Results

Image
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. 

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 biliru…

You Can Do It!

Image
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 t…

Encouraging Words

Image
That one month hospital staychanged 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.


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 wh…

One Of Those Mornings

Image
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 …

Penang Hill

Image
On the 02/01/2019, we went to Penang Hill. The last time I came here was 7 years ago. We arrived at the foot of the hillside at 6.35am and managed to ride the first funicular train up that morning. As the train reached the top, the sun was rising.
      It was cold and chilly but the view was breathtaking with a myriad of colours.

Views on top of Penang Hill
We explored the area and took photos. Later, we walked through a track which my sister proclaimed, was a shortcut back to the train station.As we were trudging along the way, the passage became steeper and narrower. 
As my feet moved towards the sloped down cemented pathway, hesitation arose within me.
How far is this trail? Will it become steeper? Would the path become muddy as we go farther away? Doubts were encroaching my mind whether I could reach the destination. I had to reassure myself. 
I am going to be OK. It may not feel like it now, but everything will be OK. Concentrate on taking one step at a time.
 As we were walking, my righ…