Colin's Condition - June 1, 2017

June 1st

Journal entry by Colin and Laura Benson — Jun 1, 2017

Colin started the day with more energy and a very positive attitude!
Last nights IVIG took over 7 1/2 hours!

He had a busy day-all day long, non stop.
Doctors, physical therapy, more ointment and wrapping him up like a mummy and a loud annoying roommate as well as his last round of IVIg tonight. 

We got a call about coordinating housing for him after he is discharged, but that won't be for at least another week to ten days. I will share that when we have worked out the details. (Housing him in the Wounded Warrior Barracks at Walter Reed National Medical Military center).

The doctors shared their conference feedback. 

Many doctors reviewed Colin's case and the feedback is:
The bad news is they still don't know what is wrong with him!!!

According to his doctor today: The good news is that they know many things that are not wrong with him. (She said that to make light of all of the many hundreds of tests and labs he has had the past two months!)

They seriously don't know what else to do other than "wait and see" and respond to his flair ups when he cycles and treat him symptomatically. 

He may have a case of prolonged DRESS with overlapping TEN. 

I hate leaving Colin at the hospital at night. I stayed most nights with him at Walter Reed 
While he is undergoing this treatment he needs to be resting. Meanwhile his roommate gets hauled away for his behavior and another one moved in and is immediately put in restraints. He is definitely in an urban hospital. 

I pray he is safe and stays strong and positive despite his circumstances and his environment. 

My parents drove all the way from Florida to Washington DC today and arrived around 1900. I will post a photo of them below. They were so glad to see Colin with their own eyes. 

And for me - it was so wonderful to hug my parents!