Day 24

From Johanna… Well, turns out, we’re still at the hospital…

Last Friday evening, Ethan started a fever, which lasted for three days. In addition, a rash began developing. This past week was spent trying to determine the source of the fever. X-rays, CT scan and an ultrasound revealed there was no active infections. Ethan’s liver function test levels are slightly elevated too. So, the docs are slowly trying to piece together the fever, rash and elevated liver enzymes.

The rash is our biggest issue right now. It’s spread so that his entire body is covered. It has angry moments and becomes inflammed throughout the day/night, where only a narcotic can ease the uncomfort and stop Ethan from crawling out of his skin. Every day I wait for it to clear up, but no luck.

For now, the docs are running many, many viral tests to determine if there may be a virus present causing the rash and abnormal liver function. If when these test results return next week showing no virus, they will assume the liver and skin have Graft vs. Host Disease (GVHD) and treat Ethan accordingly. The rash that Ethan has doesn’t present itself like the typical GVHD rash, and Ethan is supposedly at such low-risk for GVHD, as he had a full-matched sibling donor…but, weirder things have happened, I guess. GVHD treatment for Ethan will mean a low-dose of steroids, and that would clear up the rash right away.

Ethan is doing well though, all things considered. He is starting to drink. He managed to drink all of his yucky contrast/dye that he needed to for his CT scan. We mixed it with 12 ounces of Gatorade and he drank it all, at the specific times over the 2 hours! Honestly, no one thought he’d do it, but he did! He also got to go out to the garden yesterday, first time outside in 4 1/2 weeks! He walked around for 40 minutes or so, and took pictures. Daddy was with us, so that made it even more special! While Ethan is looking forward to going home, he really does well being here. He’s not fixated on going home, and I attribute that to him realizing that we still need the doctors help.

Ethan in the Big Garden

Conservatively, I’d say we’re here through the end of next week, at the very minimum. Daddy will be in on the weekend, and Mommy may take a little break. Em and Eliot are still keeping Grandma and Papa very busy in NY. We’re all still plugging along…

Thank you to everyone that’s been in to donate platelets…you’re helping so many kids out…and kudos to those that give “double batches”…Thank you for the cards and packages that Ethan receives…Thank you for your constant thoughts and prayers…