That night we brought him to the nearest hospital for consultation, New Sinai MDI Hospital. While in the ER, lab tests were done to verify the cause of his fever. After a few hours of waiting, we were informed that he has an infection again which needs to be treated in a hospital. I went to the information counter to check for available rooms but unfortunately they had a full house. I called other hospitals even calling up nearby provinces but all were full because of the dengue season. For some reason I forgot to call the hospital about 4 kilometers away from where we were. So, I took chances in calling them up, and luckily they had a vacant room we could use.
We went home to pack up our things. It was around 10:15 p.m. when we were on our way to Perpetual Hospital in Binan, Laguna. As we arrived there, the nurses immediately noticed my son's yellow skin, better known as jaundice. They asked us what happened and I recall telling them he was only having a simple fever and we were advised by the other hospital to have him confined for proper treatment, not knowing that it was not only a simple fever.
We requested to have my wife's pediatrician when she was a child to look after us under his care. We were able to get a room around 2:00 a.m. in the morning and we went off thinking it will only take a couple of days and will be heading home again. The following day, our attending pediatrician, Dr. Angeleo Matela visited us and upon seeing my son his first question was, "How is your son's stool? What color is it?". We told him it was ok and it was color brown, sometimes pale white, or gray. He immediately asked for us to save a diaper with his stool so he can see it. We did what he requested and upon his next visit presented it to him, it was September 15, 2010 (my son's 2nd Month Birthday). Upon seeing it, he sighed and said, "I think it would be best if we refer you to Dr. Cacas (Pedia-Neonatologist) for further evaluation". I can never forget his next few words, he said "With his jaundice and acholic stool, I think your son has Biliary Atresia and it would be best if we could refer him immediately to other specialists in the Philippine General Hospital or Philippine Children's Medical Center". Although I did not know what Biliary Atresia was, I felt this fear that I have never felt before. Around 5:00 p.m. that day, we were visited by Dr. Cacas, and upon seeing my son she confirmed Dr. Matela's initial diagnosis. The next day, Dr. Matela told us that it would be best if we could transfer immediately to PGH. Luckily, I have an uncle who works there (my mom's cousin), Tito Oliver De Mesa. I immediately called him up to inform him of what happened and requested if he could assist us on our transfer to PGH by getting us a room and a doctor to write the admission order of my son. Since PGH was a government hospital, a lot of people were lining up to get a room, may it be in the private room/ward or even in the charity ward. A day passed and we were not able to get a room so my godfather, Ninong Erwin Oliveros, decided to go there and personally wait for vacancy. From 7:00 a.m., it was around 7:25 p.m. of September 17, 2010 when my Ninong Erwin called me up and said there is an available room but we have to be there in two hours or else our reservation would be forfeited. We immediately packed our bags and settled our bill. With the distance from Laguna to Manila, I was calculating if we could make it there within two hours especially on a Friday. We decided to request for an ambulance for faster transportation and we were accompanied by a complete medical staff lead by Dr. Contreras the pedia resident on duty that day.
We arrived at PGH just in time and we were endorsed and admitted under the care of Dr. Lourdes Genuino (Pedia-Gastroenterologist). We met Dr. Genuino the following day and she suggested for lab tests to be done to confirm our son's disease. She immediately scheduled my son for Liver Ultrasound and upon getting the results she suggested he undergo Liver Biopsy which was done on my birthday, September 21. That afternoon we had a small celebration in our room and while I was blowing my cake I was wishing only for the best results to come. The results came in after two days, indicating "Cholestasis with obstructive pattern. Moderate portal fibrosis favor extrahepatic Biliary Atresia". This simply confirms all the doctors diagnosis. During that time I felt like the world was turning its back against me. I had questions lingering on my mind, "Why does this have to happen to my son?? Why now??". I cried for a moment as it was hard for me to accept it at first. She explained that Biliary Atresia was a rare liver disease that happens in 1 out of 15,000 live births. The only way to address this condition permanently is for my son to undergo a liver transplant. I asked Dr. Genuino what can we do and how grave was this condition. She explained to us the gravity of this condition which if not addressed immediately could be fatal. She gave us our options and explained of its consequences. She told us it was not an easy situation to be in. But with faith, anything is possible. She told us that it would be best if he could undergo the "Kasai Procedure" immediately to probably extend his life. It was the initial remedy were in they would create an alternative duct for the bile which is excreted by the liver to reach the intestines and not congest the liver.
Without losing hope, we decided to have him scheduled for the procedure and on September 28, 2010 under the hands of Dr. Josefina Almonte (Pedia Surgeon), he had the procedure done in PGH. It was around 10:00 a.m. when the operation started. After an hour, we were called to the OR. We were anxious to find out the results of the operation and we were hoping that it went well. My wife was the first one there and she was able to talk to Dr. Almonte. When I got there, she told me that it was not successful. I couldn't believe it at first but when Dr. Almonte explained the details of the operation to us, I suddenly felt like the world just fell on us. She said they were not able to do the Kasai Procedure but instead they just reapired his umbilical hernia. My wife started crying and I stood there not saying a word. I was shocked and did not know how to react. Then it just suddenly sunk in. My son's operation was not successful. We were told that our next option was to prepare him for liver transplant. Dr. Genuino informed us that liver transplants were usually done in Taiwan, Singapore, Hong Kong, or in the US which would cost around PhP 6,000,000 to PhP 10,000,000.
As she was going thru the details all I was thinking was how the heck can I raise the amount needed for the liver transplant? My mom and dad were there on the day of the operation, they immediately hugged us comforting us that we will get through this as a family. By noon, my uncle's were also there to help us plan on how we could raise the amount needed for my son. Everything was just painful. I was in denial and did not want to accept that my son has a rare disease that could be fatal if not addressed immediately. I went to the chapel and i composed my self. I prayed hard for guidance, wisdom, and comfort. After awhile I headed back to our room and told myself that I would do everything just to save the life of my son. I started writing letters to friends, family, and organizations who could possibly help us. Days passed after the operation and we noticed that there was still a lump in his belly button. When we asked the doctors what it was they would just say that it might be inflammation from the previous operation. But we were not satisfied with their answer so we requested to have it X-Rayed. Our hunch was correct, it wasn't just a lump but an intestine that was trapped in the repaired umbilical hernia. We were devastated to find out that he had to undergo surgery on the same day. It was October 2, 2010 when he was once again operated by Dr. Saguil (Pedia-Surgeon). After a couple of hours the operation was done, Dr. Saguil called to our attention another abnormality she found during the operation. She told us that our son also has Meckel's Diverticulum which is a small lump in the intestines and is needed to be addressed through operation when he gets a bit bigger. She told us it could be done during the transplant. Things were really getting worse for us. It took a couple of days and our doctors noticed that his infection was not getting any better so they referred other physicians, Dr. Francisco Anacleto (Pedia-Nephrologist) and Dr. Ana Ong-Lim (Pedia-Infectious) to help manage my son's case. After a series of tests, they found out that besides Biliary Atresia, Meckel's Diverticulum he might also have Vesico-ureteral Reflux of Kidney Reflux. We were given a new set of antibiotics and was informed that to address the reflux my son needs to undergo another operation. At the back of my mind I was shouting,"How many operations does he really have to undergo? Liver transplant? Meckel's Diverticulum? and now Kidney Reflux?".
I had to face the fact that my son was gonna be very very special for us. As a father it crushed my heart to finally accept my son's condition. I asked myself,"What would my dad do if I was the one in the situation of my son?". I know God would not give him to us for no reason. I told myself, Raphael Inigo is my son, my own flesh and blood. I would not give up the fight. I will start and join in him in his journey and would make him feel how much I love him. And so Raphael Inigo's Journey begins.--
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