The past few days have been hard, very hard. He’s fevered pretty consistently, and usually between 102 and 104.7, even on all the fever meds he could be given. On Tuesday, he stayed between 104 and 104.7 in spite of piggy backing Tylenol, Motrin, a cooling blanket turned way up, ice packs, a fan, and no clothes besides a diaper.
He’s not been interactive at all, no toys, no playing, and no smiles. Just sleeping or lying there watching.
He did grow out a nasty bacteria from his trach called Stenotrophomonas, which isn’t always susceptible to the high-powered general IV antibiotic they had him on, so on Tuesday, they added in another one as well.
But Tuesday, Tuesday was not a good day. He was maxed out on his oxygen and we still ended up bagging him several times. Multiple times the nurses were calling for respiratory therapy and doctors showed up as well. I tried to go home to work (don’t really have any time off yet) and came back after just a couple hours. Things were bad, really bad, and I was discouraged.
For the first time in years, I’ve put up collages of him being happy, playing, interacting with siblings. It’s important for staff to be able to see him as he really is, goofy, funny, outside, and not just lying sick and still in a bed. Usually, that’s not an issue. He’s that way when he’s here too. Not this time.
But last night, we got a glimmer of our Aaron.
One of the times we called respiratory, we got an RT that has known Aaron from the beginning
And as S. left, Aaron gave him a smile. The first smile we’ve seen in days.
As the day wore on, we got a few more, and then he started playing with his toys.
Don’t get me wrong. He’s still very, very sick. He’s on the hospital vent between 60 and 100% oxygen. He’s still running high fevers. He’s not that playful. But there’s something, and I’m grateful for it.
We’re not going to get out of here any time soon, unless he decides to start sprinting to the finish line. This kid usually takes his time. However, we will get there, we will make it home. And that’s a good thing.
“The smallest spark can become the greatest light.”
George E. Miller