I will continue to share posts in my blog under the category "Military Caregiver"
He rested at home for several days and was feeling a little better that following Saturday. He tried to go to work on Monday but could only last a couple of hours before breaking into a sweat and his skin was beginning to turn red (similar to a sunburn). He went home and back to bed. I (Laura "wife") was at work all day and didn't see his skin discoloration until that evening. We took him back to the emergency room that Monday April 10, 2017. The doctors suspected he may have had a mild allergic reaction to Sudafed. He was directed to stop sudafed and was sent home and not to return to the ER again until at least Friday if his symptoms worsened. However, two days later Colin’s neck began to swell enormously. His ears turned hard and felt hot. His skin was burning. We immediately took him back to the Emergency Room. At this time he was also complaining of chest pains and shortness of breath. The doctors did an EKG and chest X-rays they also began running many labs, cultures and tests on him. At first they thought it was the Mumps or the Measles or some kind of contagious disease. It was Wednesday April 12, 2017 that we arrived to the ER and he was admitted sometime in the middle of the night/early morning. His room was quarantined and was given several more tests and visits from the infectious disease doctors. Other doctors were consulted from allergy and dermatology. Each doctor had an opinion or theory on what was going on with him but no labs or tests provided anything concrete. Everyone was stumped and frustrated. His rash continued to spread and coalesce into a large bright purple mass. The swelling in his neck continued to spread to his ears and the back of his neck. After several days of this his breathing was compromised, so they began to treat with high doses of IV corticosteroids. Once on this regime his symptoms became more manageable and breathing returned to normal and the swelling began to subside, however the rash continued to spread.
Meanwhile Colin’s skin was burning and “cooking” and his immune system was fighting him.
Colin’s liver and kidney enzyme levels were dangerously elevated. His skin began to crack and slough off. I helped apply creams and medicated ointments to his rashed body and helped wash his skin, being so careful not to pull the skin off his body. He had many nights where his skin was cooking and our only options were cold showers and ice packs to bring down the fevers and heat of his skin. The rash completely filled his back and arms and was now making it's way down his legs.
The military photographer came to document his case. The doctors decided to work together on his treatment and begin a case study that could potentially help others that may find themselves in this situation.
I have documented all of his stages with photographs as well and I continue to do so, and also share them with the doctors working on his case.
A few days later April 18, they discharged him with at home care and follow up appointments. He began oral steroids and a lot of antihistamines. However, on April 22 the rash grew inside his mouth, which was a warning sign. So we took him back to the Emergency Room.
During this time Colin was on high doses of IV steroids and he was incredibly weak. His muscles have atrophied. He then received visits from many other departments including, physical therapy, behavioral and a dietitian.
Sometime on April 25, 2017 After the team of doctors reviewed several days of testing and lab results they determined that Colin could have DRESS syndrome, however he didn't have the “e” in the acronym. Drug Reaction with eosinophilia and Systemic Systems syndrome. They also said that sulfa allergies are never this bad and they haven't seen a reaction like this in a very long time and the documented cases generally are found in a different country with socioeconomic differences. This was a concern since Colin's military service has placed him in just about every country of the world! Because he didn't have any markers with eosinophils "e" they were not completely confident with this diagnosis but continued treating symptoms.
Colin was discharged on May 3rd after several days of transitioning to oral corticosteriods and still no confirmed diagnosis.
He was sent home with a follow up appointment the following Tuesday. At every follow up appointment following his discharge, we met with the entire team of doctors and had several labs. So we could spend anywhere from 2-6, sometimes 8 hours at Walter Reed National Military Medical Center. (Thankfully I had put in a leave of absence at work).
I should also mention that although we live in Downtown Washington DC (the hospital is approximately 10 miles from our home) it takes anywhere from 50-70 minutes one way to travel there going 25-30-35 mph with pedestrians and congested traffic.
Fast Forward to today. Today Colin is in a Burn Center at Washington Hospital. He has been on a extreme roller coaster for two months.
This past month he has been visiting doctors and at home resting, dealing with steroid mania, not able to sleep, meanwhile itching horribly. We have watched his rash change many colors and spread all throughout his body during several "cycles" of this supposed "DRESS" Syndrome.
What's interesting is that the "e" (Eosinophilia) started to appear in his labs.
On Sunday May 21, 2017 Colin's feet were so rashed and sore that he could not walk. In addition the skin on his waist and all down both arms was burning and looked like dead crisp flesh.
He had labs and doctor appointments on Monday. I transported him around the hospital in a wheel chair, because he could no longer walk from exhaustion and the rash and soreness on the pads of his feet. The doctors were very concerned with what was happening under the skin, so they scheduled another skin biopsy (he already had one during one of his previous hospital stays).
The following morning at 0730 we made our one hour commute to the hospital for this procedure. (It took us two hours to clean his skin, and cover it back up in the steroid ointment and gently put his clothing back on. We even ordered special clothing to help cover his arms and legs.)
I should also mention that we live in a basement row house, so unfortunately Colin needs a lot of help and support making it up 6 or 7 stairs and out to the street parking.
We finally made it to the hospital, where they took three biopsies from his sides. It was incredibly painful for him. The shot of lidocaine pierced his rashed skin, then the doctors used a tool called a "punch" to remove layers of skin. Similar to a tree core! The doctors didn't like the condition he was in, he was too weak to walk and required assistance getting in and out of the wheel chair. They allowed him all the time he needed to recover and rest. After sleeping on the table in the dermatology operating room for about 5 hours, he was sent home with me, for at home care. We began discussion of moving him to a location on base at Bethesda to help with his commute and comfort. And a wheelchair and other medical equipment was ordered for him as well as at home physical therapy.
On Wednesday he laid in bed all day, too exhausted to get out of bed for cleaning or even using the bathroom. Sometime around 2 a.m. while applying more steroid ointment we noticed blisters forming on his feet and also on his sides (near his waist line). I took photos. In the early morning we noticed even more blisters had formed causing him a great deal of pain.
Thankfully the doctors shared their emails and mobile numbers with me for an emergency. I sent the photos to all of the doctors taken from that early morning/middle of the night and the progression of the blisters appearing on the morning of Thursday May 25, 2017. They called and said to take him directly to the Emergency Room.
So, about two hours later - because it took this long for him to gently step on the tip of his toe and put his arms around my neck to ease his way to the front door and manage to make his way up the steps - we made it to the hospital. After checking him in they immediately brought him to a trauma room. The entire team of doctors met us in trauma. At this time they told us our worst fear...
So, with DRESS syndrome there is a 10% mortality rate. But worse skin diseases like Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) can develop which are at 50% mortality rate. The biopsy results came back and the visible blisters led them to believe that Colin has surpased SJS and now has TEN.
They put in a central line after a number of attempts to find a vein on an area that wasn't affected by his burnt skin.
No less than 25 medical professionals were in the room with him and also several liaisons from the Navy for non medical support as well.
It took all day to arrange for a bed in the burn center. Finally by that evening EMS transported him to a new hospital, we were taking him to the burn center.
Upon arriving at Washington Hospital we could tell that things were not going our way. They did not have a bed in the burn center, so he was brought to MICU. They took an assessment and many doctors and nurses began questioning him about his condition. A lot of disagreements and confusion happened over the next two days.
I even reached out to Colin's command and the liaisons called to check on his care and treatment at Washington Hospital.
I went home around 2 am just shortly after a gruff dermatologist confronted us about his condition and interrogated him, it was awful and overwhelming.
The next morning the military arrived with me to help support us and ensure that Colin was getting the proper care and in the right place.
The doctors at this hospital disagree with the doctors at Walter Reed. And Colin was caught in the middle of this. Meanwhile blisters had formed down both of his legs and skin was sloughing off his backside leaving open wounds and he was bleeding.
After another day at ICU we again had rough handling and more tests, cultures and even more biopsies. He had four additional biopsies and a skin scraping and they cut the skin of a blister on his toe and used a Q-tip to dig out fluid and skin.
The nurses that day were wonderful. They helped bathe him with drops of water and no soap and applied ointments to his fragile skin.
He was also started on some serious pain medication.
On Saturday we started demanding answers and the possibility that we would request to have him transferred back to Bethesda if a bed in the Burn unit didn't open up soon.
A dermatologist came by to take more samples and explained a few things which was helpful, but scary.
Colin had contracted a staph infection. It showed in his blood cultures and also skin biopsies.
They put him on antibiotics and kept a close eye on him all day.
By that evening May 27th he was moved into the burn clinic sometime around midnight. I stayed for several hours and then went home exhausted.
Over the past two days his skin has been itchy, on fire, tingling and tearing. It's so fragile and sensitive to the touch. The nurses in this burn center are amazing. This is what they specialize in and they provide excellent care. His room is warm and his skin is dressed in bandages.
His pain medication has. Even increased significantly and even though it's memorial weekend he has had visits from doctors.
They had to remove the central line and place a mid line due to the infection.
He sleeps most of the time now and has very little energy.
Please keep him in your prayers. He needs strength, live and support.
Meanwhile here are some other changes:
Our lease is up, as we were planning to move to Germany. Since that can't happen now we are looking for a new place to live closer to Walter Reed.
I am having a hard time taking care of our sweet puppies and a sick husband and when he returns home he will be very weak and have many at home medical needs, so my parents are driving up to take our dogs down to Florida to live with our daughters.
Colin's best friend and many others (all military support) have stepped up to help me with the move. Including finding a new place to live and pack our belongings.
We are trying to take everything off Colin's plate now so he can get healthy, rested and stronger.
This is a very sensitive time in our lives. Colin is a very private person, which is why we haven't told anyone his story even though he has been sick and battling this for over two months now. But it's time you all knew so you can help him get stronger and pray for him to recover.
Thank you all for your love and support
Today is Memorial Day, be sure to keep your fallen service men and women in mind with gratitude. Colin has served our country for over 22 years, but he is more to that to me, he is my husband and my very best friend.
Journal entry by Laura Benson — May 29, 2017
I will keep sending updates as soon as I can. We are told patients with DRESS have it for many months sometimes a year with flare ups and cycles or relapses. So Colin needs to hang in there for a very long journey. He is incredibly brave and strong. I am so proud of him.
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