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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
Last week, I
visited a friend who is suffering from Neurofibromatosis type 2 (NF2), a hereditary condition that causes her body to produce multiple tumours
throughout her life. Link to Yvonne's blog .
Photo was taken from her Facebook She
was supposed to go to the United States of America in May 2018 for a
cervical spine surgery. Unfortunately, before the trip, she fell on
her back and hit her head. She had to undergo a critical brain surgery instead
in Kuala Lumpur. The money she collected for the surgery in USA was all spent
on the brain surgery.
When I saw her,
the first thing I noticed was the protruding feeding tube at her stomach. Food
had to be
inserted through the feeding tube. Yvonne is deaf and blind. She is still bedridden and immobile as
a result of the fall she had in May 2018.
with Yvonne, I had to write an alphabet at a time, slowly on her palm. If she
doesn’t get the word, it must be
written all over again. It is best to use few simple w…
We could not believe how fast the funds came in after we uploaded our video appealing for funds to Patrick's liver transplant surgery fees.
I admitted that money was one big worry for without it, the surgery would not proceed. Once HOC set up the appeal on our behalf, I prayed. I prayed hard to God.
Suddenly a thought came. A video of us as a family, making a plea to friends, family and public. To save Patrick by donating to his surgery fees.
So, we quickly set it into motion on 22 May 2019.
I could not imagine the responses came beyond Malaysia - Australia, Singapore and more. From people whom I had not talked to for a few years, willingly came forward to donate, send a kind word, prayers and spread the video to their friends.
Before we go forward to the public, another worry I had was my mother. She has anxiety over Patrick. There were times I had to calm her down, assure her everything shall be fine when I admit I do not actually know whether it is so. I don't wish for my mu…
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…