The rash started Monday night, spread, and got progressively worse over the last 2 days...and, as luck would have it, is the most bothersome at night, so she’s barely been able to sleep. Caroline’s transplant team, oncology team, pharmacist, nutritionist and dermatology team have all been working together to determine the source and solution of/for the rash. They’ve basically thrown the kitchen sink at her to help ease the itchy symptoms, but unfortunately her rash is falling into a generic category, with an “unidentifiable source agent,” which is called a “morbilliform” rash. Because they can’t pinpoint exactly what’s causing the rash, they can only treat the symptoms. Treatment is in addition to the laundry list of medications she is already receiving, and includes: 3 IV medications, 1 oral medication (through NG tube), and various topical creams as needed. They do not know how long the rash will last, but best guess is another 5-7 days. She is very uncomfortable and having a hard time sleeping (as would anyone).
C. Diff is fairly common in the transplant/oncology world, due to the amount of antibiotics patients have to take. Ironically, the treatment is an(other) antibiotic. It’s a potentially life-threatening infection caused by a type of bacteria called clostridium difficile...aka: C. diff. It can cause colitis (a serious inflammation of the colon), or even more serious colon issues like toxic megacolon or bowel perforation. C. Diff is highly contagious, so Caroline will be on “contact precautions” for the duration of her stay, which is an even stricter level of isolation: everyone entering her room must wear gowns and gloves, Margaret/Mark can only enter or exit the hospital (no walking around the hallway or going to microwave/fridge/ice machine, etc.), and Caroline will not be allowed to leave the room - at all - until she is discharged, even as her ANC counts improve.
While it’s annoying to be literally confined to the room, and be completely dependent on nice people/nurses/care partners bringing you everything you need (like morning coffee!!!), we understand the severity of the infection, and how easily it can spread.
Caroline’s ANC/Neutrophil counts are zero, and we expect them to remain like that for another 7-10 days (or more). She’s getting daily Neupogen shots, and is resting when she can. She’s not talking too much, but using her thumbs up/thumbs down response to let us know how she’s feeling.
Caroline was finally able to smile and play for a little while today, for the first time in quite a few days, so that was a VERY happy for see.
We appreciate the help and visit we got this week from Pop-Pop and look forward to Caroline’s Aunt Joanna coming later this week!
Thank you for your continuous prayers for her comfort and healing.