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.