Start Of Roller Coaster

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 hospitalThe 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 done before the child is two years old. Patrick shall be so by October. After two years old, it is of higher risk because the immune system is growing more matured. Chances of new liver rejection is higher. Below two years old, the antibodies of the child would be generally lower and immune system less matured. 

We were told by PPUM doctors that Patrick tests results would likely to be out by two weeks' time. I was surprised. So did my husband for he responded with, " Is it not long? Two weeks..anything can happen in two weeks."

The doctors assured us Patrick's condition is not serious yet. 

One doctor came nearer and try to measure Patrick's spleen size by hand. Estimated size was at by 8cm. The doctor remarked no wonder Patrick's platelets dropped so much due to its size in enlargement. I felt uncomfortable hearing that. 

I am also feeling troubled of having to wait for two weeks to know the actual liver assessment. This time i decided to voice up my discomfort.

"Can't it be done earlier? Two weeks...anything can happen in two weeks."

The doctor smiled and said, "It take time get the blood test results. Much more blood needed to be extracted this time. More thorough investigation unlike before. The results would be out in a few days time or as long as a week. As for echo, that take times to set appointment as well."

The doctor assured us everything shall be fine. Not to worry about it.

Yet something in me felt...despite the assurances, I should not just leave it be. I need to be on alert at all times. Time may seem to be on Patrick's side yet it is premature to assume that based upon Patrick's level of activeness. The blood test yet to be taken as well. 

I did note Patrick's level of itchiness has increased especially during the night. The intensity caused him to wake up, crying. He has been growing more clingy. He would suddenly grabbed me tightly, refusing to let me go. I may try to put him down to sleep on the bed, but it only cause him to hold onto me tighter with loud cries. I could felt his body tensed against my body. Then after a while, he would relax and let go. 



Patrick's fussiness and cries growing day by day.

Based upon such behaviour, something is wrong. He did not express to me he is having pain. I asked Patrick. He shook his head. 

I see this sudden change in behaviour growing day by day. Two weeks to know the actual state of Patrick...seems dangerous. In the support group I had joined, a few weeks make a big difference. How a seemingly active child suddenly became opposite with other symptoms that showed stronger indication of rapid liver failure. 

Privately my husband shared his concern that if the next blood test results showed a spike in bilirubin levels - that is not a good sign.

It was arranged that the blood test on Patrick and on my husband to be done the next day. My husband is to do his fasting from midnight until 9am. 

Later in the night, a houseman walked into my room around 8.30pm. She prompted me that Patrick need to fast now until next day blood extraction at 9am. The fasting was for the purpose of letting his intestines settle down.

I felt uneasy.  Why an adult only need to fast lesser than a toddler. Was it necessary to fast a toddler when each time his blood test was done, no such requirement at all. It is the first time I hear this.

The houseman insisted that it was on Patrick's doctor instructions. Something in me reacted. I felt it should not be. 

When I stood my ground, the houseman looked visibly uncomfortable. She told me she would get back to me after confirmation with Patrick's doctor.

She returned less than twenty minutes later. She apologised to me that there was a misunderstanding on her part. That it was good of me to question her. Luckily, I did. Otherwise Patrick would suffer unnecessary suffering. 

The roller coaster ride was starting, and it was starting to be a ride of intensity for me and Patrick as days goes by.


Hang in there, Patrick! Mummy with you!


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