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.
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