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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
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…
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…
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, …