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Medical Expenses

$575 of $10,000 goal

Raised by 15 people in 1 month
Created February 16, 2019
Anyone that knows Billy understands how big his heart is. He would drop everything in a second to be there for his friends and family. As many of you know, Billy's father became ill recently and has been hospitalized. Most recently, his father was transported to Cleveland, Ohio where his lung specialists are. While his father is receiving the best care possible, he continues to remain in critical condition. Billy and his family are staying in Cleveland and commuting back and forth to the hospital daily. The hotel, gas money, and food money are all expenses they did not anticipate. Friends, now it's our turn to show Billy how much we love him. Please consider donating to help ease the financial stress for Billy and his family so they can put their focus where it needs to be. If you are unable to donate, please say a prayer for Billy and his family while they are in the trenches of a very difficult time right now.
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Update 02/20

First, a correction to a previous update; Ketamine was not the paralytic agent used to medically paralyze Dad, they used Atracurium. The doctor advised they prefer to not use Ketamine on patients who have suffered a recent heart attack because it will increase blood pressure.

On a related topic, they have now been able to remove him from blood pressure medicine. His blood pressure has been stable.

His body temperature has been low, so they are using a “bear hugger” warming blanket to keep him warm.
Today the did decide to replace his air tube. The one placed at Robert Packer before coming to Cleveland continues to disconnect multiple times per day.

Although they wanted to avoid this, they feel it is the safest option. They had not completed the exchange before we left so I will get an update regarding how the procedure went tomorrow.

Today the doctor reaffirmed his theory regarding Brilinta as the cause of the bleeding in his lungs. His Rheumatoid Arthritis can also cause bleeding in the lungs associated with other things, but they were able to rule that out as the cause. The leading hypothesis still blames the Brilinta. This would make Dad’s case only the 4th documented case of this happening. The Brilinta was replaced with Plavix. Plavix is less potent than Brilinta but can still contribute to bleeding in the lungs.

All we can do now is to wait for his lungs to recover. The doctors don’t know how long that will take, or if he will recover at all. He has very minimal lung reserve. The doctor expected that his lungs should have been getting better by now – but he still requires a minimum of 60% oxygen from the ventilator.

His kidney function is getting worse. There is still a lot of blood cells in his urine when examined under a microscope. He is putting out almost no urine now.
They still believe he has Acute Kidney Injury caused by the contrast he needed to receive to enable the stent to be placed in his heart. The heart attack caused low blood pressure. The low blood pressure coupled with the dye ended up affecting his kidneys and now they are failing.

The doctor advises we have two options;

1 – Give it a few more days and see if there is any improvement. If there are signs of improvement, then continue support. If there have been no signs of improvement, then they would transition him to “comfort” which means they would keep him on all sedatives but remove the ventilator and stop dialysis. They would discontinue use of all artificial tools.

2 – Take it as long as it goes. They would try all invasive tools for a few days and see if he gets better. If not, we would move past it, or go for eternity. They would continue doing what they are doing and hope for some sort of improvement over time. To continue that way, he would require a tracheostomy and a feeding tube through his stomach. As time passes he is becoming more and more weak due to nonuse of his muscles.

The doctor suggest we reconvene in a few days and reassess. We can compare how he is doing today to the next few days. If there is no improvement or worsening, then consider moving him to comfort. Or if there is improvement, consider a different decision.

We would like to give him another week to fight and try to pull through. I am going to return home this weekend. Mom and Misty are going to stay here with Dad. I will come back next weekend, possibly with Pat, Ken & George to discuss options.
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Update – 02/19

I apologize for the late post, but it was a very busy day. Pat Hoover, Kenneth Welch & George Welch arrived today.

Dad had a good night last night. His vitals and labs were good. His oxygen requirement from the ventilator dropped down to 55%. He couldn’t stay there for a long time, but it was a milestone. So his oxygen requirement is gently coming down, and this is a good sign. Typically, the requirement to be extubated is 30%.

There have been a few scares with his breathing tube that was put in by Robert Packer Hospital; it keeps popping off. When it is off for even a couple of seconds his saturation levels drop way down, so this is a major issue. We’ve seen it pop off while we are there. The doctors would prefer to not have to replace it as they do not want to have him off it for too long, but that might have to happen.

Very early this morning he did have an episode of Atrial Fibrillation. His heart rate reached 140 bpm. They administered Toprol via IV and it returned to normal. Toprol causes low blood pressure, which has been a concern for him all along, so they also gave him Midodrine which is a pill to keep the blood pressure up.

Also, this morning, around 9:30a, they gave him a “sedation vacation”. They turned his sedation completely off to see how well he would do. He did well for about 25 minutes before becoming a little agitated. He began to breathe a bit fast and his oxygen levels desaturated to around 80%. They put him back on sedation but at about half of the level he was on. He was still unconscious and unaware.

All the cultures from the Bronchoscopy have come back. There was one positive result for Pseudomonas, a type of bacteria, but it was a very small amount and extremely unlikely to be related to his current condition. All other tests came back negative for any types of infection.

The good news is they have been able to stop the bleeding in his lungs. After his heart attack he was given an anti-platelet medication to prevent clotting of the stent that was put in his heart. That medication was Brilinta. Brilinta is a very powerful medication and is considered the best, but there have been 3 documented cases in literature of this medication causing severe hemorrhaging in the lungs. They switched him to a different anti-platelet medication and the bleeding stopped.

His urine is still very dark because it is very concentrated and there is a lot of blood in it. Most of the tests have come back and all are negative for Vasculitis, but it is still a low possibility, but so far there is no concrete evidence for it. They are going to look at it more closely under a microscope to see what they can find.

Later this afternoon after examining the urine more closely they feel confident that the cause of his kidney damage is due to contrast (iodine) given to facilitate MRI’s.

They still need to remove fluid from his lungs to help him breathe better. Because his kidneys are not functioning correctly, they need another method to remove fluid. This will be accomplished by Dialysis. Dialysis will also help to clean his blood.

They started a gentle type of Dialysis that is pretty slow, but his blood pressure began to drop too low.

They ended up putting a central line inn his neck to give him blood pressure medications and an “A” line in his wrist which will measure his blood pressure very accurately. They were then able to successfully start the Dialysis. It will run continuously.

If he gets better, and if his blood pressure gets better, he will be able to switch to a different type of dialysis machine that would not run continuously. He would require Dialysis for the remainder of his life, depending on the patient and the kidney function, it could be required only 1 – 3 times per week.

As of 5p he is was still stacking his breaths (fighting the ventilator). Sometimes he would take 2 breaths at a time or skip one because he was still exhaling the previous. His blood gas results came back showing his acid base and his oxygen low, so they need to tweak some of his sedation settings to get him in sync with the ventilator.

At 9p he was still fighting the ventilator too much, so they decided they did need to paralyze him after-all. Unfortunately, this means they did give him the Ketamine. I am not certain how long they plan to keep him in that state. I will find out tomorrow.

The doctors are going to wait another couple of days before discussing the tracheostomy again.

Overall, he improved a tiny bit, very slowly. The doctors advise, if he makes it through this, it is going to be a very difficult, very long fight that could take several weeks or longer.

Continued prayers and support are needed and appreciated. Hoping to get an update out sooner tomorrow night.
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I don’t recall if I mentioned in previous updates that they have begun providing nutrients via a feeding tube a couple of days ago.

Also, the condom catheter they had put on has now been replaced again with a regular catheter to more closely monitor his urine output.

Dad’s kidney function continues to worsen. The doctors are trying to figure out if his lung issue is related to the kidney disease or if it is a separate process. Some tests are already in process for that.
It is not uncommon for the kidneys to be affected when something like his condition is happening. Sometimes the kidneys need to be supported or have their job taken over with dialysis.

They are going to look at his urine to see if they can get a sense of what has affected the kidneys. If his kidney function keeps getting worse – they will have to start dialysis – at least on a temporary basis. They always start dialysis with the hope that it will be temporary.
The collected a urine sample to run tests.

In addition to Dad’s Cleveland Clinic Pulmonologist, he also sees a Rheumatologist, Doctor Elisabeth Ray. Her team came in this afternoon.

Their thought is that in addition to the lung and kidney issues, he also has vasculitis. Vasculitis is the inflammation of the body’s blood vessels. It is fairly rare with only 200,000 cases reported each year, or 30 in 100,000 Americans.

They have discovered inflammation of the small blood vessels in his lungs and kidneys. It is very important that they determine what is actually causing the inflammation.

Since he has already be autoimmune suppressed for rheumatoid arthritis – it is easy for them to take him off the Xeljanz and replace it with Rituximab, a drug used to treat arthritis as well as vasculitis.

They checked his urine as they can sometimes gather if there is inflammation in the kidneys based on how the urine looks. There are some signs that maybe there is inflammation, but there was also a lot of bleeding from the urethra. They want a Nephrologist to comment.
Test results will take a couple of days. Rather than wait for results, they are going to begin treating him for vasculitis now, but they do want to be sure he actually has it.

5:00p – The Nephrologist looked at the urine sample and says it is hard to tell if he has vasculitis given that he has been sick with his blood pressure up and down, the heart attack, and the stents that were put in his heart. He believes all of this is driving his kidneys to not work at 100%.

To attempt to help his lungs heal, given the amount of oxygen required from the ventilator, they have decided to start dialysis. This is accomplished via an IV through his neck. This will help his kidneys and body by taking fluid off – which is much needed.

The Nephrologist advises they do not like to put people on dialysis unless it is absolutely needed. In dad’s case he feels the benefits of doing dialysis far outweigh any potential risks.

Dad’s brother and sister, Pat Hoover and George Welch are coming to Cleveland Clinic tomorrow.
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Update 02/18
Dad remains stable from yesterday, not progressing backwards, but no improvement. The 1st day of high dose steroids doesn’t usually see much. Effects are usually noticed after 3 days. Hopefully no new blood has been leaked to the lungs.
The doctors are going to attempt to lower his sedation levels again and hopefully he will not fight the ventilator again. Continued deep sedation will make him weak and require rehabilitation after recovery, if he recovers.
There are still no further results from the Bronchoscopy.
His kidneys are continuing to fail, he now has blood inn his urine. They are going to consult a kidney specialist. There are 4 contributing factors to his failing kidneys;
• Low blood pressure
• Contrast iodine received for studies
• Rheumatoid Arthritis causing bleeding
• pre-renal diuretics
The kidney failure is occurring acutely, so the hope is they will recover acutely if he gets passed the lung issues.
The doctors have advised that the longer a patient is on a ventilator, the less likely they are to come off it. Today is day 6 on the ventilator. They consider anything longer than 2 days a long time. Usually on day 7 they offer a tracheostomy which is inserted through the neck. Technically they can keep a patient that way for the remainder of their life – it always depends on the patient’s wishes.
As of today, his oxygen requirement from the ventilator is still at 60%, it needs to be a maximum of 30%.
Most likely nothing more to report today but will update if any news comes in.
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$575 of $10,000 goal

Raised by 15 people in 1 month
Created February 16, 2019
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