Please save John Wilson's heart

My name is Claire Gray and I am writing about my brother John Wilson who is in the ICU fighting for his life. His heart was failing him, followed by multiple organ failure. When we first heard the news, we thought we would lose him before we could even get to his side because my parents and I live so far away in Europe and Asia. 

His heart is still in critical condition. He is still on life support and everyday is a struggle for us as a family. He needs a new heart, but can't get one till it is operating at least 30%. He needs to be breathing on his own but life support is needed to help him to breathe. His liver, kidneys and lungs that went into failure are only at where they are now because once they brought him back he had to be attached to several machines and tubes to feed him medication, food, help him to pee, breathe and monitor all his vitals.

He has now been recommended by the lung specialist that he will need to have a tracheostomy because he has been on life support for over 12 days.

John Wilson is a beloved son, a loving brother, the bestest uncle and the most caring friend you could ever ask for. When he does something, he fully commits to it 100% with a passion. As a result, he is also the most stubborn person but loved by many because he always puts everyone before himself. Such as when we found out he was homeless, when he had cardiac arrest last year and didn't tell us and how he doesn't have insurance now to help pay for everything he needs to keep him with us. If he met you, I am sure he would have touched your lives in the same way with the same love and care. And for those who know my brother, please remember how much love he has given you and how much he needs your help now. 

I know I have put $300,000 as funding. But, to be honest, I don't know how much this will cost exactly because we don't know how long he will be here. I know that without insurance, being in ICU is expensive. I know someone close to me who spent 10 days in the ICU here and it cost them $190,000 and they were not in critical condition.

Everyday we try to take any little step as a positive and  it gives us hope, but everyday is still an uncertainty. We are trying to reach out because every help matters. With everyone's help we can help to pay for all treatment he needs now to be stable and if not, definitely help pay towards it.

Even if you cannot contribute a monetary value, any prayers and sharing our story would also be greatly appreciated.

My brother in law, parents and I visited my brother every day when we could in shifts. Every day the nurses and doctors were trying to be optimistic but some were too realistic and said that if he is not responsive after the sedation then what next steps we could take. They also wanted to chat about whether or not we would want to authorise having a DNR (Do Not Resuscitate). We were only there for a couple of days, we were struck with grief seeing him plugged into all kinds of machines and tubing and then they kept asking about a decision on a "DNR". We needed some time and we wanted to see for ourselves to see if he will make any improvements on his own because we have faith that he will come out of sedation and be more responsive in a couple of days.

It took a couple of days, not the less than half a day or day that they were expecting and Wilson (family call him this) was more responsive. When talking to him, he would scrunch his face in annoyance if he didn't like it. He would start following your voice when you would be talking. Eventually he was able to nod when you asked him to and he would squeeze your hand if you asked him to. The lung specialist then came round and said, this was positive, the liquid in his lungs were reducing alot and that they were quite positive in removing his tubes from his mouth. But then they asked us, what if the worst scenario happened? Do we want the DNR. Do we want the DNI? Yes, we wanted the DNI (“Do Not Intubate”) if he needed it. This means yes, we want the tubes back down his throat! But we weren't ready for the DNR yet. The tubes down his throat helped to take out the mucus and help him breathe and monitor his breathing. Taking his tubes out is supposed to be a good thing, but we didn't want to move one step forward but then take 3 steps back.

After a couple more days he was able to have his tubes out. This was a massive win in our eyes. Because this meant that he was well enough to have them out, able to breathe by himself without the tubes. They did some tests for his heart and it looked like it was operating at around 20-25%. We would take any win we could get. He was speaking, hoarsely and more like a whisper, but he was more active. He was saying he was hungry and saying he was thirsty and this was great to see his responsiveness because we know he is fighting for himself.

Next day, it was the weekend. My brother had some visitors from Florida and Daytona Beach. But they were there for less than an hour before they put the tubes back down his throat. We felt like we had taken the 3 steps back. Because they said everything seemed fine like the day before, but my brother went into respiratory distress again less than 24hrs off the tubes and they didn't know why.

Again, he had more tests agressive tests done. They found out that he had a yeast infection in his lungs. So they will give him medication to treat that. They also did a TEE: Transesophageal echocardiography. They wanted to check for any infection on the inside of his heart by passing a flexible tube down his esophagus closest to the heart to take detailed pictures of it via ultrasound waves. On a good note, there didn't seem to be an infection. But his heart was operating at less than 10%. They also said that maybe it was because Wilson had a thyroid storm, so maybe this has affected it so then he was put on medication to help calm the thyroid storm.

Again, a couple days went by and then again they said they wanted to try to take the tubes out again. Otherwise, we would have to look at the option of maybe doing a tracheostomy. So finally, the tubes were taken out for the 2nd time. Now it was a waiting game again.
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Organizer and beneficiary

Claire Gray 
Excelsior Springs, MO
Ronald Shouse