eHomemakers Malaysia

Bloodshot eyes staring at me in the mirror. My body slightly shook. I felt my heart shattered into pieces. The last time I cried this hard was when I saw Patrick's unconscious state after the KASAI surgery . Ever since we were admitted into the hospital on Monday ( 13 May 2019), I did not manage to destress. My usual method of de-stressing would be meditating and praying. If I have time I would include Qigong practices as well. It can be quite a challenge because Patrick would try to attract my attention. At one time while I was meditating, he would climb onto my body and making squealing sounds. The more I ignored him, the more he wants my attention.  During night time, Patrick had trouble sleeping. It was due to the growing itchiness of his body. There may be times he would be deeply asleep. Suddenly he would wake up with cries of distress while scratching his body. Sometimes his scratches were so hard that it drew blood on his body. Whi...

14 May 2019 Although we were prepared that more blood extraction to get from Patrick unlike before, when I finally see that in action...I was totally unprepared. One big test tube sample was used to collect Patrick's blood. And five or six small ones. Usually Patrick dislike this procedure. On the morning of 14 May 2019, two doctors dropped by our room. They  asked questions on Patrick's state. How was his stools and urine lately? His mannerisms among others. When both doctors left, one female doctor soon came after. She was  assigned to extract blood from Patrick. She prepared us to be ready soon.  Somehow when Patrick saw her, he reacted with a distress cry. When she came a little nearer to show she was friendly, Patrick cried even more and raised his index finger to the doorway. Leave me alone, doctor! Leave me be! That seem to  be the common protest of Patrick. "You want me to leave? Ok ok." Before she left, she reminded me to come soon. ...

13 May 2019 We registered Patrick for admission to the hospital on 13th May 2019. We prepared him that it shall be for one night. The impression given by the doctor last week was for one night. It turned out not to be true. I will share more of that in a subsequent article. By 4pm plus, the doctors came to us to discuss on the liver test assessment on Patrick and on my husband. I am not qualified to be a donor on initial assessment. Though it would be better I am the donor as Patrick and myself have the same blood group. My husband blood type is different, which was a cause of concern.  Before admitting Patrick to hospital, we had a WeChat discussions with one doctor representing the Shanghai hospital .  The name of the hospital who conducted children liver transplants is Renji Hospital . We shared of our concern that my husband and Patrick is of a different blood type.    The doctor assured us that it would be better this is don...

We were in the waiting lounge, waiting for my husband to collect Patrick's medication. There were times I would entertain Patrick with stories or just play with his hands. There were times he wanted to explore on his own.  The waiting lounge has some long seats for the visitors. Some seats were positioned back to back. Patrick decided to crawl along the seat. I observed him sideways, to ensure he did not fall off while doing so. To my surprise, he crawled towards the end of the seat and pulled himself up. He tip toed a little to the lady who sat behind the seat. He stared at her back for a moment. Suddenly, he placed his hand on the back of her shoulder. "Patrick! Don't touch the lady!" I quickly went over and apologised to the lady. Her face showed surprise when she saw who touched her briefly. She smiled to Patrick, then to me. She assured me it was not a problem. It was alright for Patrick to touch her.  I gazed upon her face. She loo...

Last week's blood test revealed a 30% increase in bilirubin levels and a significant drop in unhealthy levels in Patrick's platelets. Other test results also showed an unhealthy drop from the past month's blood test. We were both shocked to see this big leap in Patrick's bilirubin levels. Usually it would be a small increase or decrease by month to month's blood test assessment.  The doctor discussed with us on liver transplant. That it is time. He inquired of our background, of our mental and emotional readiness for this. He joked whether we have a BMW we can sell of to fund his liver transplant surgery. "We don't have such luxurious car. We are currently renting our home." The doctor nodded at our reply as he continued to observe our reaction. He continued to prepare us what to expect.  Although we have mentally prepared ourselves of the possibility of liver transplant, yet when we finally get the push - we still reacted with worry.  ...

"Patrick may have this. Or not. Take the genetic test to confirm." Professor Ng made the suggestion to us. We assumed that diagnosis was eliminated in 2017 after KASAI surgery. Patrick did not appear to have its symptoms. So, biliary atresia it was. We went ahead with the genetic test on Patrick and on us as parents. We did ponder what if Patrick did not have biliary atresia after all. No matter what the test revealed later, we will accept it.  Results returned - Alagille Syndrome . It was not biliary atresia. Alagille still have liver problems together with possible other organ complications such as kidney, heart, eyes among others.  As parents, the test returned that we do not have the Alagille gene. That meant it was a spontaneous mutation in Patrick.  Was I upset? Well, I have been accepting he has an illness that is a long-term management. Now it is a different diagnosis with the same long-term management. Acceptance makes it easier for ...

The eyes. I have been preparing myself for them. I remembered my husband's friend shared of her unhappiness of intrusive looks on her baby especially of the nasogastric tube in the nostril. The parents have shared of such rude stares as well in the support group. They felt self-conscious especially for their babies.  Finally, it happened. The eyes which made me felt they want to stare deep into my soul or of my son's. Sometimes with unsmiling faces.The space between us felt invaded although more than ten feet in distance.  It can be an uncomfortable feeling to be the subject of one's scrutiny.  Staring eyes onto Patrick This happened in the lifts. Restaurants. Carpark. Shopping malls. Even a walk in the neighbourhood park. Some would approach us, inquired was there anything wrong with Patrick. Young children were more direct. They either ask their parents aloud or they would ask me or my husband why Patrick the way he is. His yellow jaundiced skin ...