Liver Transplant
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.
Are we able to get the funds on time?
Is Patrick's liver starting to fail? If yes, how much time do we have in making arrangements?
Are we compatible liver donors? If not, to ask from the public? Although we do have siblings, yet this is a sensitive topic to ask for a favour. My husband have younger sisters; two of which are mothers. I have a younger brother.
Although the doctor was talking to us, my head was full of tasks we yet to do - obtaining passport for Patrick was one.
This afternoon we would be admitted to the hospital to do tests on donor compatibility and some tests to be done on Patrick as well. If the blood test on Patrick revealed later that the bilirubin levels are on an uptrend level, it is not a good sign.
I got reminded of a conversation I had with a mother who sent her daughter to China for a liver transplant last year. The initial bilirubin levels were in the range of 200+. Patrick is the same as well. Until suddenly within a few weeks, her bilirubin levels jumped to 300+ and then 500+. This made the doctor advised strongly to go for the liver transplant in order to save her daughter's life.
I remembered Patrick's doctor have prepared us to take note of signs of possible liver failure:-
1) bilirubin sudden rapid rise to unhealthy levels
2) weight loss although taking same amount of food and milk consumption.
3) sudden fatigue, tiredness and lethargy.
4) increased fussiness
5) unable to sleep much at night or rather the sleep have been much disrupted due to itchiness of the skin.
Patrick have number 1, 4 and 5. I did noticed before the recent blood test results he was becoming much more clingy and fussy than his usual behaviour. He woke up much more in the night lately due to itchiness.
There was one night recently, he kept on fussing and crying up to almost two hours before he could sleep. Sometimes I would sing to him, or pray. Or play some baby songs. Especially putting oil on his skin. If he could not stand the increased itchiness, he would look at me and say, "oil! oil!"
The weight loss he did have yet it was because of the vomiting. His coughs caused that state. Recently he recovered from his cough and flu. We shall take note whether he is losing weight when he consumed same amount of milk.
By this week's test we will know whether we have time to make planning and arrangements for Patrick's liver transplant in China.
It would be either :-
1) we have sufficient time to make all the necessary planning and arrangements.
or
2) fighting against time to save Patrick's life if his liver deteriorated severely. I had read more than 12 babies and toddlers died in one support group I joined last year. Either because their liver suddenly failed and have a few weeks to live. I read there were instances it was because the parents could not raise money on time for the surgery.
There were babies and young children who deteriorated suddenly i.e. massive bleeding in vomiting, poo and nose bleeds. After they admitted to the hospital, they died within a few days.
I read this as a reference on what to expect and prepare. To stay present, no matter which outcome. To fight for Patrick's life.
Finally it is happening now.
God, please give me strength, faith, courage, calmness, clear-mindedness to save Patrick's life. Please let our journey be smoothen out with less challenges.
Take note: For those who wondered how come we are not doing the liver transplant in Malaysia. I understand Malaysia used to have such facilities to do liver transplant between an adult and a baby/toddler. I do not know what happened that led it no longer an option. Malaysia do have resources to do adults liver transplant. I understood that there would be a possibility of a liver transplant unit in Malaysia between an adult and a baby/toddler. The surgeons at Patrick's hospital would be sent to China for training. However, I do not think Patrick can able to wait for this option based on his current health position.
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.
 |
| Deep in thought we are in, in planning for liver transplant. |
Are we able to get the funds on time?
Is Patrick's liver starting to fail? If yes, how much time do we have in making arrangements?
Are we compatible liver donors? If not, to ask from the public? Although we do have siblings, yet this is a sensitive topic to ask for a favour. My husband have younger sisters; two of which are mothers. I have a younger brother.
Although the doctor was talking to us, my head was full of tasks we yet to do - obtaining passport for Patrick was one.
This afternoon we would be admitted to the hospital to do tests on donor compatibility and some tests to be done on Patrick as well. If the blood test on Patrick revealed later that the bilirubin levels are on an uptrend level, it is not a good sign.
I got reminded of a conversation I had with a mother who sent her daughter to China for a liver transplant last year. The initial bilirubin levels were in the range of 200+. Patrick is the same as well. Until suddenly within a few weeks, her bilirubin levels jumped to 300+ and then 500+. This made the doctor advised strongly to go for the liver transplant in order to save her daughter's life.
I remembered Patrick's doctor have prepared us to take note of signs of possible liver failure:-
1) bilirubin sudden rapid rise to unhealthy levels
2) weight loss although taking same amount of food and milk consumption.
3) sudden fatigue, tiredness and lethargy.
4) increased fussiness
5) unable to sleep much at night or rather the sleep have been much disrupted due to itchiness of the skin.
Patrick have number 1, 4 and 5. I did noticed before the recent blood test results he was becoming much more clingy and fussy than his usual behaviour. He woke up much more in the night lately due to itchiness.
There was one night recently, he kept on fussing and crying up to almost two hours before he could sleep. Sometimes I would sing to him, or pray. Or play some baby songs. Especially putting oil on his skin. If he could not stand the increased itchiness, he would look at me and say, "oil! oil!"
recording of myself trying to calm Patrick
The weight loss he did have yet it was because of the vomiting. His coughs caused that state. Recently he recovered from his cough and flu. We shall take note whether he is losing weight when he consumed same amount of milk.
By this week's test we will know whether we have time to make planning and arrangements for Patrick's liver transplant in China.
It would be either :-
1) we have sufficient time to make all the necessary planning and arrangements.
or
2) fighting against time to save Patrick's life if his liver deteriorated severely. I had read more than 12 babies and toddlers died in one support group I joined last year. Either because their liver suddenly failed and have a few weeks to live. I read there were instances it was because the parents could not raise money on time for the surgery.
There were babies and young children who deteriorated suddenly i.e. massive bleeding in vomiting, poo and nose bleeds. After they admitted to the hospital, they died within a few days.
I read this as a reference on what to expect and prepare. To stay present, no matter which outcome. To fight for Patrick's life.
Finally it is happening now.
God, please give me strength, faith, courage, calmness, clear-mindedness to save Patrick's life. Please let our journey be smoothen out with less challenges.
 |
| Praying, hoping for Patrick. |
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