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As many of you have been following Josh’s journey since he’s been hospitalized until now, you can see it’s been an emotional rollercoaster and a long journey. I want to share a little about Josh, what has happened and what will happen in the future to paint a better picture.
Being a dad is what Josh is most proud of. He loves our two kids Vera (7 yrs) & Theodore (5 yrs) with all of his heart. We’ve been married for almost ten years now and I can’t imagine spending my life with anyone but Josh. He’s my best friend and an amazing husband. Aside from that Josh is a loving son and brother to his parents and his siblings. He enjoys and is so passionate about his job as a Infrastructure Engineer.
On December 8th, Josh’s test came back positive. For a whole week and a half, he had body aches, chills, a fever and shortness of breath. Yet, he kept telling me he was ok because that’s just who Josh is. He never wanted anyone to worry about him. On Friday, December 17th, I finally took him into urgent care. When we arrived, the staff measured his oxygen at 63%, which is dangerously low. From there, he was taken by ambulance to St. Vincent hospital. For about two weeks, he fought hard to stay on the BiPAP machine to avoid intubation. However on January 9th, his body was far too tired and he ultimately was intubated. For weeks, doctors and nurses kept delivering bad news to us. His doctor told us multiple times that Josh’s x-rays were not improving. They showed us his CT scan which showed how much fibrosis surrounded his lungs. The care team in Green Bay basically told us, it was a waiting game for another organ to fail and then it would be time to let Josh go. There were times the family and I felt hopeless but every time we looked at Josh, we knew it wasn’t his time. I remember one morning, the doctor came in, my father in law was in the room with me and Josh. He told us, Josh’s only way to make it out of this was a lung transplant. But that no one will accept him because he did not meet certain criterias. I asked the doctor to try because we need to exhaust everything. He agreed but told me the chances are low. Doctor came back later that afternoon and told me, “Milwaukee declined your husband.” I said, “Well let’s try Madison then.” He slowly backed out of the room and said, it probably won’t happen. The very next day, Josh’s brother, Ronald went to stay with him. While I reached out to multiple lung transplant programs throughout WI, IL and MN. The first one I called was Froedtert hospital. I believe it all happened for a reason.
On the morning of Friday, January 21st, Sarah, our coordinator called and told me they’d like Josh’s care to be transferred. Not only that, they wanted him flown to Milwaukee that very night. And that was Josh’s journey to Froedtert.
Since Josh has been at Froedtert, he’s been placed on ECMO. A device that oxygenates his blood outside of his body. It would allow the team to ween him off the ventilator and his sedation medication. At one point, while he is on ECMO, the ventilator, his sedation was reduced, and he was able to sit at the side of his bed and even stand for a bit. Doctors noted he has a 10% chance of lung recovery. On January 26th, Josh was extubated. He’s been making progress since then. His care team commend him for his persistence.
From here, Josh will do physical therapy to strengthen his body again. Within the next two weeks, the care team will determine whether Josh’s lung damage is reversible or not. If not, he will be placed on the lung transplant waitlist. I can’t deny that Josh is a fighter so along side of him, I will continue to fight.
Looking up the cost for a double lung transplant, you will find that the average is $1.3 million dollars. Although Josh has private insurance through work, it does not cover all medical expenses. So I’m here to kindly and gracefully ask some financial support as we navigate down this road to recovery.
Josh is only 32 years old, he has so much life left to live. I can’t thank the care team at Froedtert for taking Josh under their wings.
Every single day, we’ll keep fighting.
**Funds will go directly to Help, Hope, Live who will help allocate the money towards anything medically related for Josh. We will not have direct access to what is raised. What is raised can go towards, Josh’s hospital stay, medication, or anything that has been impacted by Josh’s medical journey. **
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Family and friends of Joshua Thao are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.
Joshua has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
03/02/2022: It's been a week since Josh was discharged from the hospital. He didn't want any big announcement or anything. He just wanted to enjoy being home for a little bit. We had to go back down to Milwaukee for another CT scan, pulmonary function test and to follow up with his doctor yesterday. To our surprise, the doctor said there looks like there is improvements in Josh's lungs. Hopefully with time, Josh will be able to ween and be completely off oxygen support. Right now, he's currently on 2-3 liters at rest and 8 liters with activity. The progress seems slow but even within the week that he's been home, I've seen so much improvements. So as of right now, a lung transplant is not in the picture. The plan of care now is to have Josh do pulmonary rehibition to help strengthen his body and lungs. We'll do another follow up in 3 months with the care team in Milwaukee. As Josh's doctor said, "remarkable" that's the only way to put it.
2/16/22: It's been a eventful few days. On Friday night, the CVICU doctor offered to Josh, to turn down his ECMO settings so Josh could get a feel for what life would be like without it. On Saturday, they started the ween. He was getting 80% oxygen support with a swipe of 6 (helps push CO2 out of your body) by the end of the day he was at 30% oxygen with a swipe of 2 and by Sunday, he was at 21% oxygen with a swipe of 1. Which meant, ECMO wasn't really supporting Josh. The doctors decided because Josh was tolerating those settings, it was time to take it out. On Monday, Feb 14th, they de-cannulated Josh. This is a huge relief because being on ECMO has it's own set of complications. Plus it means Josh's lungs are doing enough work with some oxygen support. He's still on the nasal cannula with oxygen support. Transplant is no longer in the short term goals. The care team is going to give us another week to do another CT scan, more blood work and more respiratory tests to see if and how Josh's lungs will improve. From there, we'll circle back to transplant or not.
2/11/2022: The verdict for the CT scan came yesterday, the doctors are recommending we list Josh for a transplant. The lower parts of his lung show some improvement but the top parts show worsening fibrous. The thought of it is so scary, we hear so many different things. Lungs are a stubborn and tricky organ. Life expectancy after a transplant can vary anywhere from 1-6 years. We'd be lucky to get 20-30 years. Either way, we can't keep Josh on ECMO forever. We've decided to list but to work as hard as we can to see if Josh's lungs will wake up while we wait for a potential donor.
Josh has been doing great. He puts his all in for occupational and physical therapy. Every day he's been walking further and taking less breaks. He mentally pushes himself to do better too.
2/9/2022: Josh did a swallow study today and he's been cleared to have a regular diet and liquids now. Previously he was on a soft, thin and mildly thicken liquids. His nurse for the past two days have been great, she washed Josh's hair thoroughly and helped him shaved. He looks like he's 17 now. Tomorrow is a big day because it'll be Josh's last CT scan to show if his lungs have improved or not. From there, we'll determine what Josh's new plan of care will be. Please send prayers as we hope that Josh's lungs will show some improvement.
2/7/2022: Hi all, sorry it's been a few days since I've written an update. Spending my days away with Josh. Every day I'm amazed by his will power and strength to keep pushing through. On 02/04/2022, he walked in the hallway for the first time. He also walked on Saturday and today. In just those few days, his breathing and coordination has improved so much. Tomorrow, they will do another bronchoscopy procedure to see if there has been any improvements. Another CT scan will be performed on 2/10 as well. If there are no signs of improvements, Josh will be presented the to Lung Transplant Board to see if they want to move forward with listing him.
The thought of a Lung Transplant is scary for both Josh and I. Josh has a "we gotta do, what we gotta do" attitude. I told him, at the end of the day, there's no end game. There's only going home, either with his lungs or a new pair.
Please continue to send prayers <3
2/4/2022: It's been two weeks since Josh has been at Froedtert. They've finally allowed visitors. So as I'm writing this update, I'm with Josh. He's taking a nap right now. He did some physical therapy today and did well. Yesterday, he had too much anxiety and wasn't able to do any at all. We told him, he did well and that today is a good day so to not be too hard on himself. He's still trying to find his balance and coordination. I'm so happy to be here now and cheering him on.
02/01/2022: Josh has had good and bad days. He's been working so hard with physical therapy to strength his muscles again. Our biggest challenge is his mental health. With the weening of his sedation medication, lack of sleep, and not being able to have visitors, it's weighing on him. I keep hoping and praying the hospital will allow visitors soon. It would be so much help. In ICU standards, Josh's vitals have been looking good. Please continue to send prayers for Josh, praying that God heals Josh's lungs, for him to bring Josh comfort and a peace of mind.
01/29/2022: Thank you for stopping by, please make sure to leave a note in the guestbook. We'd love to connect with everyone who has helped donate to Josh's journey to recovery.
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Stay fighting and hoping you get well soon
Anonymous
Always praying for you Josh. God is good in all situations. You are not alone. We all fight with you.
Panh Song
Keep fighting! Can’t wait to see you go home to your kids with a new set of lungs!
Nouche Do
Wishing you a speedy recovery!
Nancy Kong
Sending positive vibes your way, Josh! Stay strong and keep fighting. ❤
-Lang and Yer
Lang Vang
Hi Josh and family, Keep fighting the fight and take it one day at time. We are thinking about you and the family always.
Love,
Dotafamc
Ong Vue
Stay strong and keep working towards recovery! All the best!!
Mai Yia Lee
Hi Joshua,
I don’t know you and you don’t know me but I just want to give this small donation to help towards your recovery road. Keep fighting and hang in there for your love ones! One day at a time! Fighting!
Sunny Yang
You are stronger then you know, please don’t give up. The road won’t be easy but God will walk you through this and you will come out of this stronger than before. We love you and thinking about you every day, Josh. Can’t wait to see and hug you. Be strong Brother, remember your wife and two babies are waiting for you to come home.
Phanthong Smith
Praying for a fast recovery
Steve and yeng Vue
Prayers for your recovery and strength and support for you and your family.
Mary Sapitro
You’re a beast Josh. You got this.
Wyatt Veseth
Keeping Josh and his family in our prayers. Hoping for continued success in his recovery.
DW
Darren Wesley
Praying you get to go home soon to your family and friends! - Louie & Alexa!
Louie Lee
Josh, you are such a strong-willed person, and your family needs you so much. Gary and I are sending our love, thoughts and prayers to you and your family. Get better soon.
Teela Vang
For Serena’s uncle <3
Kaoe Kong
Keep fighting Josh. We are hoping for a speedy recovery.
Pao Yang
Come home soon bro!
Yia Moua
Keeping Josh in my thoughts and prayers. Hoping for a speedy and healthy recovery!
Kevin Xiong
Sending my thoughts and prayers for a speedy recovery!!
Michelle Claase
I am praying for Josh’s speedy recovery and may God protect and watch over your family during this period. Lots of love to you all.
Janine Claase
Prayers for Josh.
Allan Xiong
Your friends at RGL Logistics are thinking and praying for you! We wish you all the best!!
Alan Leisgang
May God bless and heal you. Get well soon!
Cher Thao
Wishing for uncle Joshua to get better!!! Praying for your family! Stay strong!
Ntsaiab Thor
Hey Josh,
Anna and I are praying for you and your family in this time of hardship. Stay strong!!!!
- Xue
Xue Xiong
Sending you and your family well wishes! We’re keeping you in our thoughts!
Choua Yang
Hi Josh & Family,
We are praying for you every day! May you be healed by the grace of God. Hoping soon you'll be reunited with your family and loved ones. Keep fighting and know that we love you!
PN & Tommy Her
PANGNHIA XIONG
We can’t wait to see you up and smiling again, Josh. You got this!
Kim and Sai
Josh and family,
Stay strong and keep fighting! Been there for you since day one and will continue to keep supporting. You and your family are in our thoughts and prayers. Come home soon Josh, we all miss you bro.
Love,
Peter & Yang Family
Peter Yang
Hey Josh,
Get well soon brother.
Futo and family
Futo Thao
Thov Vajtswv pab os
Mee Thao
Hey Brother, you are in my thoughts and I\'m praying for you everyday man, get well and come back to us soon. Stay strong and don\'t give up, you got this!. Not gonna give up hope. Come back to us Joshua Thao
Daniel Thor
I believe that you will make a full recovery in no time! My thoughts and prayers are with you and your family. Get well soon Josh!
Akisna and Andy
Akisna Xiong
Stay strong!! You got this! One day at a time!!!!! Hoping it all gets better asap (:
Shannon Xiong
We are waiting for you to come home soon Josh
Vam Moua Thao
Stay strong and hoping for a fast recovery so you'll be able to come home.
Cheng Vang
Wishing for fast recovery for Josh!!
Rueben Thao
Stay strong and get well soon cousin.
Kai Yang
Praying for your family!
Kaylee Kuhn
Recover fast bro! Praying for you every day
Jonathan Kong
Josh and all family are in my heart and prayers.
Kerri Martin
Kerri Martin
Stay strong Josh. You've always been a strong guy. We will see you when you get out!
-Peng + May
Peng Yang
Praying for you.
ann lor
Keeping you in our prayers.
Meegan Song
You got this Josh! Much love
Gerr Yang
Good luck on your transplant and recovery!
Judy Yang
Good luck and hope for a swift recovery. You got this.
Cang C.
We love you Josh. You got this brother! Know that your Xiong fam has constantly been praying for you.
Tou Xiong
For a strong fighter, father, husband, and son-in-law. You got this! We’ll continue to pray for all positive outcomes and fast recovery. Love you guys!
Mai Nhia Lor
Hey Brother! Praying for you always!! Love you!!
Christa Thao
Be strong Godspeed
Alexander Hang
i love you guys with all my heart!
Pa Voua Yang
Praying for you Josh!
Blong Xiong
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Joshua Thao
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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