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Patrick jaundice level was the same as last week which was at 229. However, his weight dropped from 5.4kg (Monday, 2/7/2018) to 5.3kg ( Thursday, 5/7/2018).
The colours of his stools, on occasion was under "good" as in accordance to the stool chart and the doctor's assessment.
Baby Stool Colours Chart
On a good note, his appetite during the day has increased. He appeared to be growing more active. His activeness went much higher than usual. So much so until I had to ask Dr. Ng on my son's hyperactivity. Dr Ng assessed that it was because his nutrition level had improved. This reflected in his activeness, which was a good sign.
It was my mission impossible in trying to stop him from experiencing his trauma of re-insertion of his tube. It lasted for almost a week. My reflexes needed to be a lot faster than usual. Even when I am in a dazed mood especially after waking up from my sleep, I have to be fast in my reflexes.
Despite the fact that Patrick's growth in weight was small, however, to my surprise, his growth in personality appeared to be growing very well. He had grown to be more talkative and socialised even with the doctors and nurses. Whom he usually had an aversion to.
His blood test was done weekly. One section of the blood would identify whether it was an indication of a beginning of a liver failure. It used to be on a normal range. Last Thursday's blood test revealed that it had entered into the borderline range. The test is called INR (International Normalised Ratio). It is done to check whether the person have a blood clotting problem.
Doctor prescribed vitamin K for Patrick. It was to find out whether he had vitamin K deficiency or signs of the liver failing.
By next week's blood test, we will know whether Patrick would still be continued on monitoring stage or he will undergo preparation for a liver transplant.
I have to admit, it had been a roller coaster ride. A test of Patience for us. For the past few months, the doctor advice was maybe the next appointment a decision for transplant as Patrick did not appear to have any significant in improvement. However on each appointment, the conclusion would be not yet, as his condition was not worsening.
By next week, this decision arises again. No matter the results, both myself and my husband will take courage, faith and strength to do what we can for Patrick.
I had been appreciative of my friends' prayers, kindness, efforts, love and dedication for Patrick's especially.
Even in this hospital, there were a few mothers who blessed Patrick. Especially one particular mother whose baby daughter was in a more serious condition than Patrick. I called her Mummy V.
Whenever we bumped into each other especially in the pantry, she kept talking about God to us especially to Patrick. That God loves all children. When Mummy V mentioned that "God loves you" to Patrick, he automatically gave a big smile, as if he understood. As she continued talking of God to Patrick, she also mentioned of Jesus..something in the lines of "In the name of Jesus, He would heal you etc.."
Amazingly, Patrick listened attentively and appeared to acknowledge her by baby talk at the end of her prayers for him.
This mother's baby daughter was 6 months old at 1.8kg. She was born premature. Many tests were done. However, nothing was discovered as to the cause of her daughter's state. Many special formula milk were prescribed by the doctors and most could not help her daughter in gaining weight. It can be very expensive too. She shared one tin of a special formula milk can cost up to RM1,500.00 per week.
I was shocked by the expenses. I was concerned whether she could afford it. She shared that there are charitable fundraisers for milk powder. I felt relieved in hearing that. From what I understood, her husband works as a government servant and she herself, a nurse. Both are not making a big income that can cover the special milk formula expenses.
I am experiencing the best of Humanity, even at the hospital here. Feeling inspired, hopeful, grateful.
International Women's Day is here once more. Some celebrated it. Some feel should not as a celebration of womanhood should be everyday. To me, these days can be served as a reminder to us. We can be preoccupied with our responsibilities, activities, our families and of life that we sometimes even forget our own birthday.
Today I reflected on the women who have impacted me. Because of these women, they inspired me to write a woman song in 2018.
Women Song sang on 8 March 2020, dedicated to all women readers here. I wrote it in 2018. There are so many women out there who made a big impact on me over the years since a teenager until today. Let me list them whom I can remember offhand:-
1) Anne Subashini - founder of The Inclusive Outdoor Classroom. I have the privilege to get to know her since drum circle days. Her passion is infectious. Her faith, her belief that there should be no division between children no matter of their backgrounds, no matter of their health conditioning is emp…
The birth of Patrick changed my marriage life from the two of us to the three of us, a family. We were excited, happy, worried followed by all kind of emotions for our baby son. So many things to learn, to experience. Breastfeeding, constant thoughts on our baby's well being especially when his jaundice appeared to rise during his first month. The lacking of sleep. There were moments I observed his breathing while he slept. We were amazed by every new mannerisms that Patrick displayed. We were so charmed when he first smiled to us. I would observed how gently my husband would treat Patrick and how Patrick would looked up to him, listening to his every word.
We were enjoying ourselves as new parents until something happened in the middle of November 2017 that changed our lives forever. "There is something not right with his stools."
My sister in law remarked to me while I tiredly changed Patrick's diapers. Mentally I can be exhausted as new mothers would be. We visited my s…
looked at his pale face and frail body on the hospital bed. Lines and tubes on
his legs and neck. There was a bag at the right side with yellowish looking
water inside. The liquid was not urine but water which had to be pumped out
from his stomach cavity. It was difficult
to see someone whom you have known since young to look so weak. He had lost
weight and aged considerably. It
was the second day of Chinese New Year. My sister and I took a trip down
to Kuala Lumpur to visit relatives. We visited a cousin at the High Dependency Unit,
he had liver cancer and was complaining of diarrhea. Visiting hours were 11.30am
to 1.30am and 5.30pm to 7.30pm. We had to take turns going in as only 2 guests
at a time are allowed.
having the experience of a prolonged stay at the hospital and being immobile, I
was tongue tied. I didn’t know what to say or how to comfort him. I could
only share with him of my previous struggle at the hospital. On
our second visit before our trip back to Penang, …