Braun Jones | CaringBridge

Braun Jones

First post: Feb 21, 2016 Latest post: Sep 23, 2016
Recent events for Braun and Tina

In October Braun started experiencing coughing and congestion.  He couldn’t shake it, so he went to his primary care physician and was given a course of prednisone and felt much better.  After finishing the meds, his cough persisted.  He was also experiencing fevers, headaches, blood in his urine and ultimately, significant unexplained weightloss.  As you can imagine, Braun was determined to beat it so he persevered, even keeping his regiment of tennis two-three times a week up to a point, while he and Tina continued to seek answers. Ultimately he was referred to a rheumatologist as there was suspicion of an auto immunedisease.  Several tests were performed and there was a suggestion of arterial vasculitis and, possibly polymyalgiarheumatic (PMR).  To confirm the diagnosis, the doctor wanted to conduct a fairly invasive biopsy which entailed cutting into the back of the neck and the temple. Prior to moving forward in this direction, Braun and Tina scheduled a second opinion with another rheumatologist at Johns Hopkins.

In the meantime after Christmas, they, along with Braun III, Angela and the grandkids, went on a family vacation in Ocean Reef, Florida, the planned home base for the Ocean Pearl.   

Upon their return, Braun started feeling pain in his right leg and returned to his doctor.  It was determined that he had developed a blood clot (dvt) in his right leg and was put on a blood thinner.

After consulting with the second rheumatologist, she did not believe he he had arterial vasculitis and ordered several additional tests. She was narrowing in on a possible diagnosis of small vessel vasculitis.  The scans showed that his kidneys and spleen were inflamed and wanted to take a biopsy to rule out a malignancy.  In addition, she had scheduled a CT head/brain scan as well as an Echocardiogram.  The doctor had also ordered a change to injectable blood thinners that have a reversal agent unlike the one he was taking.  She needed to be able to reverse the effects of the blood thinners prior to conducting the biopsy of the kidney. The rheumatologist and his primary care physician were very concerned and attentive and spoke with him several times over the weekend prior to his stroke. 

What the doctor had planned as mentioned above was scheduled for Monday, January 18.   That morning, Tina was awakened by Braun who was disoriented and in distress.  911 was called and he was rushed to Alexandria Hospital.  A short time later, he was air lifted to INOVA Fairfax where he is today.

The week of his admittance into the hospital, as one would imagine, the doctors’ focus was on the hemorrhaging in his brain (spontaneous bleed) and stabilizing his condition.  Braun suffered a hemorrhagic stoke, likely caused by a weakened blood vessel, not a thrombotic stroke which was the concern of the blood clot. The bleed occurred in the right frontal lobe.  Due to the blood thinners he was taking to break up the clot in his leg, the neurosurgeon was unable to perform surgery to reduce the pressure on his brain caused by the bleed.

Meanwhile, Tina and Braun, III relentlessly suggested to all of the various doctors who visited him each day that there was an underlying issue that Braun was struggling with and for which a diagnosis had proved elusive.  They reminded every doctor that made rounds that this needed to be addressed.  At that time, the doctors were clear that their main concern at that time, understandably, was the brain bleed and stabilizing his condition.

On day three of his hospitalization, they finally addressed the blood clot by performing an ultrasound to confirm that it still existed.  They then performed a procedure which involved inserting a filter through his groin and into the large vein (vena cava) which returns to the heart to protect against any portion of the clot breaking away and moving to his lungs or brain.

Finally, on the fourth day, the doctors focused on other issues when they discovered a blood infection.  Further, he had developed pulmonary edema. 

During the ensuing days, several tests were ordered which included an Echocardiogram.  The echo was inconclusive so they performed a TEE, a Transesophageal Echocardiogram.  This allows for an ultrasound transducer to be inserted down the esophagus to allow for a closer look at the heart valves.  The test confirmed what they then suspected, bacteria on his aortic heart valve.  The condition is known as Bacterial Endocarditis.  In Braun’s case, the valve is damaged and not functioning properly.  As his heart beats, the valve does not close properly, allowing more blood to regurgitate back into the heart than out.  His condition will require an aortic heart valve replacement.

The following day, the Neurosurgeon performed an angiogram of the brain to determine if any of the bacteria had broken away and made its way into the brain and potentially causing an aneurism and/or creating an infection.  They were very pleased that there was no evidence of either scenario.

Braun is currently not strong enough for this surgery, so the plan is to stabilize him enough to get him into rehabilitation to gain back some of his strength. 

The good news is that he’s been breathing on his own for almost two weeks.  He is still not able to swallow well enough to eat; however, they just changed his feeding tube to a Peg Line which will be much more comfortable.  Daily therapy will continue to help him redevelop the ability to swallow.

Braun is becoming more alert, talking more and we are optimistic that he will continue to progress every day.  It is still too early for visitors.  It is going to be a long process but if anyone can rise to the challenge…it’s BRAUN JONES!

The family has been overwhelmed with love and support and for that they are forever grateful. Please keep the Captain in your prayers…as they have been powerful!

We will continue to share new developments as warranted.  

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