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It has been almost half a year since my last blog. There were many moments we have experienced as a family. The good times, the worrying times. The blessings and gratitude.
We reached Renji Hospital, Shanghai, China in the middle of June 2019. We stayed for almost 6 weeks; from preparation for the liver transplant surgery, surgery, ICU and recovery stage.
Patrick's surgery scheduled on 2 July 2019. The surgery was successful with no complications. Immediately after the surgery, they send him to ICU. After almost a week, he was discharged to normal ward.
We get to observe his progress in the ICU by the doctors' daily photo taking to us. Seeing his face made us feel comforted. There were moments I am concerned Patrick will get scared to where he was and that he may have thoughts we abandon him. I prayed for his safe recovery in ICU, hoping it would not be too long. I have heard there was one baby after his liver transplant surgery who needed to be in ICU for two weeks due to complications.
Chronological events in China
Patrick's emotional state was not in a good positive manner unlike before transplant. He was moody, unhappy and bored. To uplift him, I would sing to him often. I would try to be comical to make him laugh and smile. I would read to him. I would try many ways to make Patrick feel safe, comforted especially to let him know his parents is with him throughout this discomforting period. Often I assure Patrick that once he gets better, we will return home. Please be patient, I often tell Patrick. His eyes have full of questions. We would try to explain in the simplest manner that this pain he is experiencing is to save his life. That it will get better with time. That one day he will understand when he grows up.
It had been an intense and emotional experience for the three of us. I have never seen both my son, Patrick and my husband in such a vulnerable manner after the liver transplant. My husband was the donor. My husband took a lot of courage and endurance to overcome the pain of recovery as the liver donor. My husband took almost a week before he can stand up from the bed and walk once more. I understood the surgeons removed less than 20% of his liver to Patrick. The surgeon informed him that his liver shall grow back in six months' time. Liver is the only internal organ which can regenerate itself.
It was a life changing experience for him. If you ask him whether he would do it again to save Patrick's life? He will say yes.
The doctors revealed the liver removed to be "at a very bad stage", which the doctors termed it as the end stage liver failure. Without this transplant, Patrick would unlikely to live to his second birthday on October 2019.
Patrick's former liver.
During his recovery in the normal ward, he suffered diarrhoea and bad nappy rash for almost two weeks. After he fully recovered from this, Renji Hospital finally discharged Patrick to return home!
Once we returned to Malaysia, Patrick have to admit to the hospital for further evaluation to ensure no liver rejection.
For two months plus, his medical checkup was weekly. Afterwards, every two weeks until today.
In between these appointments, there was a period his platelets kept dropping continuously from 140s to 45 within 1.5 months. The recent medical appointment showed it has climbed up a little. The doctors believed the reason for this low platelets was because of the medication effects. If his platelets continued to drop without stopping, Patrick's medication may need to be changed.
Patrick is currently on daily medication with the purpose to suppress his immune system. Otherwise chances of his liver rejection will happen. I would share further in subsequent blogs on Patrick's progress and what we have been up to since my last blogging.
When Patrick is on his recovery from his transplant, his yellowed eyes were the first to go. Then his jaundiced coloured skin disappeared in stages. His stools no longer have that pale-ish colour and become darker brown today. He no longer itches daily. His abdomen no longer looked swollen; it was so before transplant because of his enlarged liver and enlarged spleen which pushed against his intestines. He has become even more active and talkative than before. One of the biggest change is his recovery from flu and cough. Before the liver transplant, it would take him on average 10 - 16 days to recover.
I remembered there was one time in January 2019 when he recovered from one bout of flu and cough in almost three weeks. He recovered in a day or two and then he caught another strain of coughing from my husband which took slightly more than a month to recover. During this recovery stage, his weight was dropping because his cough caused to regurgitate. Recently this month he caught flu and cough. It took him less than 6 days to recover.
Before I end this blog, I would like to share the difference in my son since the liver transplant as follows:-
The difference in Patrick after liver transplant.
To those who have been praying and donating to Patrick's liver transplant fundraising, thank you very much.
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, …