Laura Burk Benson

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 ha...

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 additio...

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...

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 ...

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, et...

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 ...

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 hour...