Saturday, May 1, 2010

The long wait is over, on the way to recovery...(JC at the general ward)

...just looking back

JC's prolong stay at the ICU really saddened us. The days from December 15 to February 18 were the longest days we have ever experienced in our entire lives.After almost three months of liver transplant operation, the hospital international coordinator told us that we have to prepare money for our funds might not be enough and will not last until March due to certain problems on JC's spleen and nutrition that needed special treatment... we did not know what to do then! JC was not yet eating that time but only being given special nutrition that includes TPN (total parenteral nutrition) and intrafat and special milk. At that time chylous leakage still persisted so that VB (vacuum ball) drainage were both remained. Nutritionist advised TPN (total parenteral nutrition) and low fat diet on it. JC had good liver function; however, hospitalization was then required to him for further treatment. JC HAD TO STAY THEN AT THE GENERAL WARD STILL FOR A LONGER PERIOD OF TIME. BUT THE GOOD NEWS WAS THAT JAN CIRYL SHOWED GREAT IMPROVEMENTS DAY BY DAY! THANKS TO GOD AND TO ALL THOSE PEOPLE WHO HAVE BEEN THERE HELPING US SINCE DAY ONE OF OUR BATTLE TO BILIARY ATRESIA.

We were able to post our call for help at the KaohsiungLiving , a website whose members are different people from different walks of life living in Kaohsiung. A very helpful person has thought of this idea and told our family. Thank you Brother Deo Laranang. You were always there to help us. At first, our case was then treated such a scam. But one member went to visit us and then came a lot of people visiting us soon. Due to Brother Deo's persistence in sending direct/personal mails, a lot responded to our call. Most of them endorsed our plea to their churches. We then received a lot of invitations. Help came pouring out. Actually, we were lack of money to buy our daily needs already in the month of December. But God has provided a lot of people to help us. Help came in different ways. Some brought financial help, some brought food, and most importantly some came to pray with us. We were able to raise funds though JC was still at the ward. And because God was always there to help us...leading our way all through out those days. JC was then discharged at the general ward on March 13, 2010.

MATTHEW 8:7

"And Jesus said to him, "I will come and heal him."

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MY YOUNGEST SON NEEDS YOUR HELP...PLEASE

Good day friends...My youngest son Jan Ciryl Tiburcio has a very rare liver ailment called "biliary atresia"...he needs liver transplant in order to live. It is a condition where the liver does not have enough bile ducts and as a result the bile builds up within and destroying his liver. You may visit the website of Lift-Babies Foundation Inc-Philippines for more information about the disease. Pediatric liver transplants can be done at the Chang Gung Memorial Hospital in Kaohsiung Taiwan, at the Glen Eagles Hospital in Singapore, or at the Queen Mary Hospital in HongKong at a cost ranging from 4 to 7 million pesos. We can not afford such huge amounts that is why we appeal for your compassion. Please help us raise money for the transplant. Any amount you can contribute will help ensure my son's survival. I am begging all of you.

Eloisa
Mother of JC

Biliary Atresia (BA)

(excerpts from American Liver Foundation website)

Explore this section to learn more about biliary atresia, including a description of the disease and how it's diagnosed.

What is biliary atresia?

Biliary atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.

In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.

What causes biliary atresia?

The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.

Scientists do know that biliary atresia is not hereditary; parents do not pass it on to their child. It is also not contagious, and it is not preventable. It is also not caused by anything an expectant mother did or did not do.

What are the symptoms of biliary atresia?

Symptoms of biliary atresia usually appear between two and six weeks after birth. The baby will appear jaundiced, with yellowing of the skin and whites of the eyes. The liver may harden and the abdomen may become swollen. Stools appear pale grey and the urine may appear dark. Some babies may develop intense itching.

How is biliary atresia diagnosed?

Since other conditions lead to symptoms similar to those of biliary atresia, doctors must perform many tests before a conclusive diagnosis can be made. These tests may include blood and liver tests, an ultrasound examination, X-rays and a liver biopsy, in which a small amount of liver tissue is removed with a needle for examination in a laboratory.

How is biliary atresia treated?

Unfortunately, there is no cure for biliary atresia. The only treatment is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. This surgery is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it.

The aim of the Kasai procedure is to allow drainage of bile from the liver into the intestine through the new duct. The operation is completely or partially successful about 80 percent of the time if performed early (before 3 months of age). In babies who respond well, jaundice and other symptoms usually disappear after several weeks.

In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver, as well as extrahepatic, or outside the liver. No procedure, except for liver transplant, has been developed to replace blocked intrahepatic ducts.

The Kasai procedure is most successful in babies younger than 3-months-old, so early diagnosis is important.

If the Kasai procedure is not successful, the only other option is a liver transplant. However, a suitable donor organ must be found quickly, before damage to the liver from the backed-up bile becomes deadly.

What happens after surgery?

The aim of treatment after surgery is to encourage normal growth and development. If bile flow is good, the child is given a regular diet. If tests show that bile flow is reduced, a low-fat diet and vitamin supplements will be required, since the absorption of fats and vitamins is impaired.

What is the outlook for babies with biliary atresia?

Without successful treatment, few children with biliary atresia live beyond age two. In some cases, where the Kasai procedure is completely successful, the child may recover and live a normal life. However, in most cases, even when surgery is successful, patients will suffer gradual damage to the liver. These children will need specialized medical care throughout their lives, and many will ultimately need a liver transplant.

Is a liver transplant the solution?

In children with biliary atresia, a liver transplant is generally not attempted unless the Kasai procedure has been tried. In cases where that operation is unsuccessful, the child may become a candidate for a liver transplant. Success depends on the timely availability of a matching donor liver. Fortunately, survival rates for liver transplant recipients have increased dramatically with improved surgical techniques and the development of drugs that help overcome the problem of organ rejection.

What can the family do?

Watching a newborn suffer from biliary atresia is a heart-breaking experience. Parents are frustrated because so little is known about the disease and treatment options are so limited. Many parents find comfort in support groups because it allows them to talk to other parents in similar situations. Finding out that others feel the way they do, and learning how other parents are coping with a child’s disease, is often a great comfort.

Blessings Beyond Measure...God Saved Jan!

Saturday, May 1, 2010

The long wait is over, on the way to recovery...(JC at the general ward)

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