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From Friends with Love for Pinot & Family

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Update, September 27, 2022: Welcome home! A new chapter has begun. After two months in the hospital and one month in a rehabilitation clinic, Pinot came back home on September 15.

The original plan was for him to stay in a long-term care facility due to his medical record and level of consciousness. Until his second month in the hospital, he was still considered to have the lowest level of consciousness based on the Glasgow Coma Scale (GCS). His GCS score was 3 (completely unresponsive) out of 15 (completely responsive).

Along the way, he regained consciousness. His responsiveness and ability to follow instructions have made him a good candidate for acute care therapy, which includes physical, occupational, speech and language therapies. In the past month, he's spent 3-5 hours a day, five days a week to redevelop his essential skills and motor functions, to learn daily life activities and to learn to speak. Now he can sit in the wheelchair and even control an electric wheelchair that gives him “power” over his coordination ability. He has also been able to provide simple commands. In his final days there, for the first time after three months of staying in bed and looking at the ceiling, he had a chance to go around the rehabilitation building with a wheelchair that he controlled himself. He's also been using letters, writing to communicate, and drawing what was on his mind. He makes jokes. His personality doesn’t change much.

He no longer needs his tracheostomy tube. Just one day before he was discharged from rehabilitation, the physician team decided to perform a tracheostomy decannulation as he had already been alert, oriented and responsive, and he is not dependent on a ventilator for assisted breathing. Though he still needs to regain his voice, muscle strength, and ability to swallow, he can now make more progress at home with his beloved family. His goal is to have in-home therapy to improve strength and increase mobility.

May the Force always be with him. His resilience and perseverance, combined with showers of love from all of you, have brought him to where he is today. Pixel by pixel.

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Update, August 9, 2022: Pinot and his lovely family are real fighters. He was diagnosed with a pontine (brain stem) hemorrhage stroke and had been in a coma and on life support since June 24, 2022. Doctors said he was in a very poor condition and had little chance to ever live a normal life again. His family refused to give up and did everything they could to support him. It seemed Pinot also refused to surrender.

After several weeks, he gradually progressed by passing through vegetative and minimally conscious states. He pulled through. He has an acute respiratory failure with hypoxia and oropharyngeal dysphagia due to stroke, but he is OFF life support. He can breathe by himself. He can blink his eyes and communicates by blinking. He can nod and shake his head. He can understand people talking. He can read. He remembers his childhood. He remembers his friends. He can laugh. He can cry. He started moving his left arm and leg, also learning to make voices. He improves a little bit at a time. Miracles happen.

Soon he will be discharged from the hospital and proceed to acute rehabilitation for a short-term intensive therapy program. His subsequent recovery stage will be homecare. Pinot and his family would like to thank you for your continuous support, generosity, prayers and thoughts. You are a part of his recovery journey that has enabled him to endure this challenging time.

He will get through this, pixel by pixel.

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Wahyu Ichwandardi (@pinot , @pinotski), called Papin by his children, is a warm-hearted son, brother, husband, father, colleague, friend, and mentor to anyone who knows him personally or even just met him. He recently suffered a blood clot in his brain and is currently in a coma and on life support, but we know he is fighting to be among us again. He is strong and we hope he will get through this.

His artwork, his videos, and thoughtful social media posts are all filled with his positive energy and desire to make the world a better place. He has touched many hearts with his works and words. He is the kind of person we need to remind us to act and think positively. He has inspired many of us, but he would say that he gets inspired by all of us, as well. He created an oasis of positive energy for many of us.

We were heartbroken by the news. But our personal messages, prayers and support have been a strength to his family. And now we are hoping for a miracle. We want to help him and his family during this difficult time as he has been a light to all of us.

As family and friends have expressed their desire to contribute, this fundraising is to help his family lighten their load during this challenging time. We all love him and we will keep praying for his health.
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Organizer and beneficiary

Andini Wijendaru
Organizer
Bayside, NY
Wahyu Ichwandardi
Beneficiary

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