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A week or so after this time (on July 27th, actually my birthday), Daisuke started to have stomach pains and went to the ER.He got fluid removed from his stomach and at the same time, a liver was available. However, unfortunately, it was a bad liver. I don't know the details, but bottom line, it was not functional. I keep looking back to this moment and wishing it was a good liver that came in.
He was back home at the motel. Then, on July 31st, he got pains in his right leg and it started to swell and produce heat. They took him to the ER and waited for 4 hours in the waiting room while many doctors came to examine him. During this time, he started to get several large fluid filled blisters on his leg. Once he got a room, doctors told the family that he has a bacterial infection in his leg that is spreading in an extremely rapid speed. They had to immediately amputate his leg or his life was in danger. |
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It was spreading so quickly that a decision had to be made at the spot. The mother told me later that she was so shocked it had to be cut off and asked whether there was a way to keep it or think about it a little longer, but it was immediate. The patient and the parents needed to sign a form to have the operation and while Daisuke signed, the mother had reservations. But Daisuke told his mother, "It's ok, mom. I will be fine. Please sign the form." The mother said to me later, "When you hear such a steady and calmness coming from a child who is going to lose a leg, it just breaks your heart." |
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So he was sedated and his leg was amputated. Unfortunately, Daisuke never woke up after the surgery. He was on a ventilator and sleeping until his end. All this organs were deteriorating because of the toxins circulating in the body that the liver could not clean out and his body was too weak. Although the bacterial infection was contained, he then got a fungal infection. To a normal person it would not be a big deal. He was in no condition to get a transplant and I think the family saw the first signs of a tragic end. |
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For 11 days after the leg surgery, he was in the ICU as the doctors initially first saw active brain waves with the EEG tests. Daisuke was given doses of the most expensive medicine at Shands, but it did not work. His body was shutting down. |
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The night of the 11th, the doctors said they would have a meeting discussing Daisuke's condition the next morning. I believe the family knew what was coming as the father said he could not sleep that night. The next morning, it was confirmed that the brain waves were no longer active and he had no hope of survival. The parents then decided to stop his oxygen. I was at work when I got a call from Nakajima-san. I came right after and was with the family in the ICU along with other translators and doctors who took care of them. The last I had seen Daisuke was at the restaurant so I was very surprised to see him in the ICU. |
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The mother put the picture of Daisuke's older sister and the baby in Daisuke's hand and said, "your sister is with you and watching over you." The parents both kept saying, "yoku ganbatta." (You did very well) "Arigatoune." (Thank you for everything). The doctors came, gave him a relaxer, and slowly turned the ventilator off until Daisuke was breathing on his own. He then died 6:12pm on August 12th. The parents said they have so many countless memories of him and that hey were happy they were able to be with him for half of their life. |
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There was a viewing yesterday night(13th) where the father and mother stayed the night at the funeral home. It's called otsuya in Japan. Usually the body is brought back to the home for 24 hours, but because of the circumstance here in America, the parents stayed at the huneral home overnight instead. THere were about 15 people that came to the otsuya( more people than I thought) and everyone was really supportive and loving. The care showed to the family was amazing. I think from the support they recieve from people here, they will find strength while they are here away from close family. A Japanese lady told them, "Now get some food, rest, and get energized or Daisuke would be sad." The father and mother bowed deeply to each person as they left that night. I really am at a loss for words. Last night, the fatehr said he is going to talk to Daisuke all night and look back at the years spent together. Daisuke was in the fishing club in college so some of the doctors who came bought alittle fishing rod to be placed with him, among other notes and cards for him. |
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The father said that death eventually comes to everyone so it's just a matter of when. He said Daisuke knew of all the support and encouragement he received and was really thanksful for everyone. There were people in Japan who lost a child with the same liver disease and told Daisuke that he must get better and not die from it like others have. Daisuke was saying after he gets better, he wants to volunteer a lot and give back to others. His mother tried to see if Daisuke's heart was able to be donated, but unfortunately even his heart was in bad condition. |
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The father said, through all this, he has never seen such out pour of support from people. He said in Japan, people came hours away by train to put money into the donation box. Others have come to him saying they recently found that their child has PCS(the liver disease) also. He wonders if those families will also have to go through teh same experience in eight years time. |
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