Colin's Condition - 21 Days to Discharge

21 Days to Discharge

Journal entry by  Laura Benson — Nov 21, 2017

The day has finally arrived.  Colin was "discharged" this afternoon.  I have this word in quotes, because technically speaking, Colin lives at the hospital's clinic throughout each day and sleeps in the Wounded Warrior barracks.

On Friday, the PICC team was sent to Colon's hospital room, but they refused because his skin was too inflamed and scaling.  Several days of scrubbing him and covering his skin in Vaseline wraps did the trick!  On Monday the PICC line was placed and the dressing was replaced this morning.  Meanwhile, I (Laura) received training and practiced giving my husband antibiotic IV several times.

Nurses came for a visit to the barracks to review and train on the use of all of his medical supplies.  (There are several bags and two large boxes of medicine and supplies that were sent with us and also brought to his barracks.)

This evening he will have to return to the hospital for sleep evaluation.  (And I will have to enter the sleep clinic, quietly, to give him various medications and his IV to him at 11 p.m. and 2 a.m.)

Then, finally he will be able to get some rest in his barracks with me continuing to provide wound care, medications and IV's from here on out.  Hopefully he will not have to return to the hospital (inpatient) and will be able to complete his care and treatment plan outpatient.  The IV's are for the staph infection that he contracted inpatient.  He has at least another three weeks of IV antibiotics.

So we are not out of the woods yet.  He has a very long way to go.  We continue to pray for patience and a full recovery.  The doctors discharged him away with an unofficial diagnosis of relapsing, remitting chronic DRESS syndrome.  They plan to taper him off steroids over the next 6 months.  Additionally, we are working with the Mayo Clinic in Rochester, MN for the possibility of a second opinion consultation and treatment plan.  

Our Thanksgiving will be spent here on base, potentially in the galley with other servicemen and women and their families.  (New experience for me, very familiar for Colin).

We are thankful for your love, support and prayers!

Colin's Condition - 2 infections

Two Infections

Journal entry by Laura Benson — Nov 16, 2017

Each day we hope that things will get better.  His skin condition comes and goes.  I have seen piles of skin fall to the floor in the past week.  They adjust his medicine and then his skin turns a "dusky grey" and then the next day it's red and swollen, begins to crack and then slough off.  Colin tells me that his skin is always painful and terribly itchy.

His IV site was moved over the weekend.  The site where the IV had previously been placed was swollen and pus was coming out of it.  We had a very long three day weekend with very little staff and doctor rounds (Veterans Day was observed on Friday).  They have been testing him for infections every morning with blood cultures.  Something came back positive, but was dismissed due to the fact that he sheds so much skin that the sample was contaminated.  Additionally, they did not want to give him any additional medicine (due to his high inflammatory condition).

Monday was an extremely busy day for Colin.  He consistently saw teams of various doctors from different departments all day and into the evening.
It turns out that he has a staph infection.  They began a strong antibiotic and then ordered blood cultures for every morning.  On Monday Colin had a MRI of his spine and CT of his neck and head and an ultrasound on his forearm where the IV site was infected.  On Tuesday he had an echo cardiogram.  Meanwhile they were still treating the infection with very high doses of antibiotics and his skin was having another evolution.  The plan was to keep him in the hospital until he no longer had a positive blood culture for 72 hours.  Then, go back to our room (barracks) on base with a PICC line, for me to administer his antibiotic through the IV.  He would need to be on this regimen for about two weeks.  We were hoping he would be discharged for convalescent leave to see family in Orlando, FL and then make plans to get to the Mayo Clinic in Rochester, MN for a second opinion.
Later that afternoon, infectious disease doctors determined that he has a different type of infection: staph aureus.  So, they switched him to a new antibiotic and explained that now his treatment plan would be for 4-6 weeks.  So that rules out any Thanksgiving Family time and also pushes our timeline back for the second opinion.  Additionally, he is sleeping all day with very little energy and his skin is cracking and peeling off.
To make matters even worse......on Wednesday (while I was at a Safe Harbor Family Symposium for the Navy) he was given the news that he "may" have c-diff.  He was exhausted, but had tried to give me the updates on all of the doctors that had come by to visit him while I was out.  (This is why I get anxious when I leave, and also the reason I take notes and document everything - because Colin changes from one moment to the next, it's very hard to keep it all straight).

Luckily, the meeting was at the USO and everything on this base is walk able, so I made it to his hospital room quickly.  When I arrived he said they were only testing him and that it was not a sure thing.  So I gave him a hug and kiss and in that exact moment, the doctor walked in and said he tested positive for c-diff and everyone has to suit up and the room is in contact precautions.  (They had me use soap and water to wash off).  So now I can't even hug or kiss or touch my husband who is so miserable and feeling defeated by this DRESS syndrome or Auto Immune or some type of virus that has been beating him up.
The new treatment plan is to give him an additional antibiotic and quarantine. 

 
On a positive note, one of my childhood friends came by to visit us on Veterans Day.  It had been over 20+ years!  And another childhood friend came through for us by hand delivering the doctor's report, presentation and case study documentations to the Mayo Clinic.  

I could give a hundred other examples of how thankful we are to our friends and family for everything they are doing to help support us through this difficult time in our lives.  

We are so blessed.  In spite of this horrible ordeal, we are blessed.

Colin's Condition - Relapses and Grand Rounds at NIH

Additional relapse with more testing and a visit to the NIH

Journal entry by  Laura Benson — Nov 11, 2017

Colin had been suffering with a worsening rash and has been getting weaker each day.  In addition, his heart is racing and his blood pressure is up.  He has headaches, feels dizzy, confused and nauseated now as well. he continues to press on and attend daily (outpatient) appointments with various departments at Walter Reed.  

On October 31, 2017 he repeated his PET Scan, while tapering Cyclosporine - hoping to get better imagines by removing the medication that could possible mask cancer.  Lymphoma needs to be ruled out do to his various skin conditions and a few previous labs had markers.

On November 1, 2017 he barely made it to his first appointment and on his way to his next appointment we ran into one of his main doctor that follows him closely.  We were put into his office to review the PET scan that showed lymph node activity.  This doctor told me to expect a phone call from Hematology/Oncology to coordinate a lymph node biopsy this week.  He noticed Colin was having a hard time catching his breath and escorted us to his next appointment.  Colin had his dermatology "light booth" session where he said his skin was stinging and he needed to recover from this in a way that was alarming and concerning.  The Nurse and Doctor did his vitals and immediately sent him to the ER with a racing heart rate.  He had various tests in the ER for his heart - of course they asked about his skin and health/immune condition, which ironically was secondary to what was currently happening with his heart.
So his heart was given all of the attention in the ER and thankfully dermatology had called in a report on Colin's skin to notify them of his particular rare atypical condition, so they could focus on his heart.  Later, he was admitted to the hospital.

Throughout the next several days, while inpatient, Colin started feeling worse.  He noticed his neck (right side) hurting one early morning.  Later that evening the top of his head went numb.  Then the following morning the left side of his neck was aching.  In addition, his lymph nodes were swelling.  
He and I knew what was happening.  He has stopped taken Cyclosporine, and now things were starting to evolve inside him. What is it?  Will we ever get to the bottom of this?  How much longer will he have to suffer with this illness?

November 6, 2017
DRESS or DIHS? 

Colin has been sick since March 2017. He has had five relapses and lost all of his skin due to SJS/TENs in May/June. He has had 11 skin biopsies and hundreds of labs and tests and see over 10 other departments. 
He is losing his skin again, while trying to rule out lymphoma. 

It has been eight months and his condition has significantly escalated. He was admitted last Wednesday and he is being monitored closely. But doctors are scratching their heads, because Colin is atypical. 
In addition to 11 skin biopsies, he will have a bone marrow biopsy and a lymph node core biopsy. 
Thursday he will be sent to the NIH for Grand Rounds (National Institute of Health). We need other doctors to review his case. 
Colin is SO unique that he is now a case study. 

(Colin is currently on a Prednisone taper, he has received three days of IVIG and completed a cyclosporine taper.)

November 7, 2017
Sadly, Colin is much worse off today. They were able to do the bone marrow biopsy (So painful!! Especially in his weakened condition.  His skin is literally puffy, swollen and tearing off). The procedure was very painful and the process of transporting him to the oncology clinic was just awful.  Immediately after this biopsy sent to IR (Interventional Radiology) for a lymph node biopsy. Two biopsies today! 
He is so unbelievably strong! I am so proud of my strong husband! 
They only did a needle core biopsy and not a full node, due to his compromised immune system and weakened state. However, they would have preferred the full, but it wasn't an option for him.

His skin began weeping last night, swelling and leaking. Today the skin is breaking off and breaking down. 
Of his 11 skin core biopsies none of them have come back the same. All resulted in different types of skin conditions. This information continues to stump his dermatologists, infectious disease and internal medicine doctors.  Each relapse has been different as well. Sometimes it's elevated enzymes, sometimes it's his organs, every time it's skin in various stages.  
He has never recovered, if you do happen to see him or see a photo of him, what is happening is pure exhaustion and fatigue and skin evolution. He is just being barely managed, but is suffering daily. 

To be clear, Colin is a case study. They are trying to uncover what he has. It is not a bacteria, it is either auto immune, some rare virus or a rare form of cancer. Some doctors think it’s Atypical DRESS syndrome, or a chronic, prolonged DRESS syndrome rare case. But to say that he is Atypical then....maybe it’s not DRESS at all. The doctors are bringing him to National Institute of Health on Thursday (literally directly across from us). We are hoping to meet other doctors from various hospitals in the state to present Colin’s case. I have asked the doctors to share the case study with me so I can share with all of you. So many, many of you have shared his story on Facebook. We are so grateful! Thank you. We know that something will come from this. Colin is very unique and this is rare. Please know how much we appreciate all of your prayers, concerns and that you shared his story. 
Here are some photos of him today, progressively getting worse. 

November 8, 2017
Today Colin’s skin is in the process of sloughing off. He is currently wrapped from head to toe. After having a bone marrow biopsy AND a lymph node needle biopsy performed yesterday, the doctors did this while medicine had been removed from his system for over 1 1/2 weeks, now they have conducted their tests and he has resumed medicine to prevent him from an urgent transfer back to Washington Hospital's Burn Center (which is where he has been sent previously with SJS/TENs back in May & June). The medicines (steroids and immune suppressants) that he is taking will help manage/control his over active immune condition-  unfortunately they also mask other tests and imagining, when looking for something like cancer. So he had been withdrawn from it, to aid in their testing, probing, scanning and painful biopsies.  And now that his condition is severe, he was immediately placed on IV steroids and IV Cyclosporine.  
This medicine is not a solution or a cure to his condition. He is still in serious condition. 

Our doctors have suggested that we should look into getting Colin a second opinion. This is complicated because Colin is in the military, however we are going to make this happen.
We are asking for your help with a premiere Hospital or University with a dermatologist team that specializes in rare cases, viruses, cancers. i.e. prolonged or chronic DRESS syndrome and autoimmune.  

November 9, 2017
Colin attended "Grand Rounds” at NIH (National Institute of Health). Approximately 75 doctors and students viewed him this morning. Walter Reed, Georgetown, George Washington University, Howard University and NIH. 

He is extremely private, so I am bursting with pride. Imagine having so many strangers look our entire body over and examine you 3-4 people at a time for 60 minutes! 
Hopefully these doctors will help provide helpful insight to his unique condition. Meanwhile, his skin is continuing to swell (looks like it will burst open) crack and crumble off. Very painful today. But well worth the effort of transporting him here. Thanks to his doctors coordination.

Colin appreciates all of you.
He’s just not able to take any calls now. So please reach out to me, Laura. We welcome your calls and texts and messages. I read all of them to him.  
All of us want Colin to recover and heal from this. And he wants to return to his life with his family and his daughters and his puppies and return to Active Duty statues again, to serve our country as he has for over 22 years.  I am so proud of my husband's incredible strength.  He continues to persevere through this severe illness in ways that cannot be expressed on this blog or in a Facebook post.  He is amazing.  I have no doubt this strength is what made him so successful and brave in his career as well.  

Colin is living on this military base (NSA Bethesda) as a Seriously Ill and Injured Serviceman (Active Duty Senior Chief in the USN) living in Tranquility Hall “building 62” and I am not here as his wife, on the contrary wives actually can’t live here. I am only allowed here to serve and support him as his full time advocate or "NMA" (non medical attendant).

There are so many departments, doctors, nurse care managers and liaisons involved in his care that I help coordinate while advocating for him daily. 

This is the President's Hospital, and seriously injured Service Personnel are sent here to this base Hospital. A lot of tragic and sad things happen on a daily basis here as well as some amazing recoveries and successes.  We have been exposed to many new experiences.  We certainly live in an amazing and unique environment. 

(http://www.wrnmmc.capmed.mil/About%20Us/SitePages/Facts.aspx) 

So on this Veterans Day, please remember to not only appreciate - but pray for our military and their families.  And we ask that you remember the 22 Veterans who take their lives every day.  

God Bless you all!  Thank you for all of your prayers. 

Colin's Condition - Relapse with another visit to the ER

Relapse with another visit to the ER

Journal entry by Laura Benson — Oct 14, 2017

Colin had an infusion called "Reclast" on Wednesday October 10, 2017. The infusion was given to help offset the long term side effects of the high dosage of steroids that he has been taking. 

Later that evening, Colin became violently ill. Unfortunately he was alone in his room on base. He was able to phone me (Laura) in the early morning. And thankfully I was able to catch a same day flight to DC and get myself up to the base. 
He was suffering from a severe reaction to the infusion due to his weakened immune system. In addition, I noticed his skin was pink and scaling, which signaled a possible relapse. 

The base ambulance transported him to the ER and he was later admitted to the hospital. 

***** catching everyone up on the past six months:  While impatient at Washington Hospital Center's Burn Unit Colin was given three days of infusions called IVIG which produced no tangible results. In addition, Colin was showing signs of another relapse. So the doctors immediately began high dosages of cyclosporine. Meanwhile Colin lost all of the skin on the legs from his thighs to his toes and also his arms down to his fingers. Sadly, while this was all happening right in front of the doctors and still adhering to the diagnosis of DRESS, while referring to this as a "Diagnosis of exclusion". Additional diagnosis were mentioned: Steven Johnson's Syndrome and Toxic Epidermal Necrolysis 
Colin was also visited by the Hematology Oncology doctors who startled us with terrifying news of a possibly finding in the skin scraping and blood labs - t-Cell lymphoma.  
During this time the military's Navy Wounded Warrior Safe Harbor Program approached us about assistance. 

The Hospital then discharged Colin and he was now outpatient; however living in base in the Wounded Warrior Barracks with me as his NMA (non medical attendant). 

Every day I wheeled Colin to and from various medicinal departments to follow up with his condition and I cared for his wounds in his room. 
He gained the ability to walk again in later July. 

He was showing signs of improvement, so they resumed his steroid taper. 

The steriods and cyclosporine helps to hold his rash at bay, but the high doses from each medicine required is dangerous for his health. He has seen many additional doctors that treat the side effects of long term steroid use.
many times they have had to adjust the dosage due to skin breakouts and painful eruptions. 

Colin is chronically fatigued and is always scratching, shedding skin and complaining of the chronic pain he feels in his body, especially in his skin. 

Colin's Condition - May 31, 2017

Morning after the first IVIG 

Journal entry by Laura Benson — May 31, 2017

Colin's transfer took approximately six hours.  Thankfully, he had no side effects and he was able to receive the entire transfer of donated antibodies.  (It's too medically complicated for me to explain, but that is the reason it took so many hours.  A lot of vital checks - every 15 minutes in the beginning, etc.)

The nurses let me stay for the first hour (beyond visiting hours).  He should have two more transfers (one per day).

For information about the IVIG, I have pasted a few links to some articles below: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548378/  (IVIG for DRESS syndrome)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958184/  (IVIG for for SJS/TEN syndrome)

Colin also had a visit from Hematology yesterday and again this morning.  The doctors will closely be monitoring not only his labs, biopsies, etc. but now ultrasounds of all of his organs and CT scans have been ordered for today.  I will try to post again later.

Yesterday was a very long and exhausting (and painful) day for him. 

Please continue to pray for him!  

We know that God is working through Colin, because he is comforted knowing God is with him. Throughout the entire two months he has remained very positive and optimistic and so brave!

Day 2 of IVIG

Journal entry by Laura Benson — May 31, 2017

Today... he's tired. Exhausted !!!

The energy left him as the day dragged on. He tried to move around and even got out of bed for a brief moment. That was great! But painful and exhausting for him. 


He had a "bed bath" and his nurse and I carefully reapplied Aquaphor and specialized burn wraps to his legs, then wrapped them up again. He looks like a mummy. 


He received flowers sent from his previous command, NAWCTSD in Orlando, Fl. 

Thank you! Photo below (you can see Colin in the mirror if you look closely). 

They certainly brightened his day and this room. 


I helped prepare all of the photos that I have taken of him over the past two months for the doctors at Washington Hospital. 

The dermatologist are presenting his case tomorrow. 


The doctors were pleased he accepted the IVIG transfer successfully and said we should see a positive change in him anywhere from 7-10 days from now. 


This evening he started Day 2 of IVIG


Thank you all for your prayers, we know He is listening and the Holy Spirit is comforting him in this very difficult and challenging time. 

Colin is staying strong!!

Colin's Condition - May 30, 2017

Journal entry by  Laura Benson — May 30, 2017

It's been a very long, rough day. Colin is in a lot of pain. He is covered in Aquaphor ointment which is incredibly sticky/tacky. Each time he moves his skin will stick to the sheet below him and tears off a large chunk of his skin! 

His blisters are popping and continue to spread. Also extremely painful. 
Additionally, sadly another rash has begun. He officially is relapsing again with another "cycle" 
He itched all night long, today his skin is hot and prickly on his arms, back and abdomen and the rash is quickly spreading. 

His skin was wrapped in special burn medicated wraps (xeroform and silver nitrate) and a sleeve of gauze is placed over everything to hold it in place. 

We met with many doctors today. 
An especially informative meeting was with the dermatologist team today. 
They used the phrase interface reaction and also DIHS 
But still no official diagnosis was made. 

Additional labs and a visit from hematology for blood smears and more

The most interesting and controversial and hopeful part of his day is that Colin will begin three days of IVIg which is similar to a blood transfusion that will give him antibodies from others to help him fight "this thing that's attacking him"

Round one is scheduled for this evening. 

Please keep him in your prayers. Today was one of his worst days. 

I have attached a photo of a nurse wrapping his legs. 

Colin's aunt Kathy has been so helpful explaining many of these medical terms to me, she shared an article below, about this type of blood transfusion known as intravenous immunoglobulin (IVIG)
http://onlinelibrary.wiley.com/store/10.1111/1346-8138.12925/asset/jde12925.pdf?v=1&t=j3c6yiv2&s=b26f3274052aa9a3108d4567c21e0f0a938ee95a 


Another link is here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/ 

Colin's Condition - In the Beginning

My husband has given permission to me to share his current medical condition and backstory.  We previously shared his story with family and close friends only through a CaringBridge Site. 
I will continue to share posts in my blog under the category "Military Caregiver"

Colin’s story began March 23, 2017 when he was prescribed a Sulfa based antibiotic, Septra aka Bactrim. He took all of the prescribed medication but became lethargic and ill, similar to the flu, on April 1, 2017. For several days he had chills, body aches, high fever and sweats. We took him to the Emergency Room with a very high fever on April 5, 2017. They sent him home with Tylenol and Motrin as well as cough and cold suppressants with an assumption that he had the flu, but couldn't confirm with tests because we missed that window. 


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. 

Memorial Day evening

Journal entry by Laura Benson — May 29, 2017

Visiting hours are over for the day. I need to leave Colin for the night. 
I'm just waiting for his nighttime medication and pain medicine, then I will feel more comfortable leaving him. 
He has aquaphor rubbed all over, which has removed skin in several places. 
They have wrapped him in bandages. He is in a whole lot of pain today.

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.