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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.
On a journey of uncertainty, confusion, chaos and emotional turbulence, that is when we turn to Faith. Some lost Faith when they did not get the answers they wanted or what they prayed for did not manifest. Some Faiths however strengthen despite the journey appearing more unknown and uncertain. To me, Faith is a personal journey. No one can tell you what you should do with your Faith. It's yours alone and not for others to dictate what it should be to their understanding. To their belief system. To their comfort zone. For God would show the ever faithful His Answer, His Direction. His Guidance. I remembered my Faith was weakened in the month of April 2018. Patrick's jaundice did not appear to be growing any better. In fact, it was steadily increasing in bilirubin. My mother questioned on why is he not getting any better. Sometimes I do not know how to answer her. How could I give her a definite answer when the doctors could not? On average, I had been sleeping 3 hours nightly bec…
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…
During updating Patrick's status to a friend of mine today, Patrick called out from the bed. I looked up to his dancing eyes and smiling face. This would usually put me in smiles. Instead, I watched his face more closely than usual. Much earlier this morning, closer to 2am, his vomit was mixed with blood. He was down with flu and cough since late last week. Earlier this week since Monday, the past couple of nights had been trying to us both. He woke up a few times coughing that caused him to vomit out his milk. For my readers who have not been aware, every night his nasogastric tube attached to a machine that pumped in milk throughout the night. I do this upon the doctor's advice to assist him to gain weight. HIs running nose irritated Patrick when its mucus dripped onto his upper lip. His body temperature did not appear to reach 37.5C and beyond. He has been active, as per his normal self except during the night he appeared to be more fussy than usual. He also appeared to want…