Yeah, yeah, yeah. I know. It’s been a while.
Look, I hear you. I was posting on the reg, and then suddenly nothing for more than a month. If I was reading this blog, I would be pissed.
Here’s the deal: the last 6 weeks have pretty much sucked. It is really easy to share uplifting, James-is-challenged-but-ultimately-prevails type stories. They make me feel good to write, and they make you feel good to read…everybody wins!
But the fact of the matter, as difficult as it is to talk about (and for me to admit to myself), is that medical fragility and chronic illness is not some kind of “fight” that we “win”. James is home, but he’s still a very sick baby.
We had almost a month and a half of calm after Blythedale, where James was off oxygen and seemed to really be making strides. But three weeks ago he broke out in an alarming rash known as petechiae, resulting in a terrified drive to the ER where, after a very uncomfortable night of observation (and my first time sleeping in a hospital crib) we were sent home with antibiotics and the diagnosis of a rare type of urinary tract infection that was likely hospital-acquired. If you’re paying attention, you’ll know this kept me awake many nights afterwards: since J doesn’t get fevers and hadn’t been in the hospital since July 22, he may have been suffering without us knowing for weeks before discovery.
This was followed by yet another panicked drive to the ER 3 days later when J presented me with a diaper full of what we thought was blood. We were re-admitted for a night to the bone marrow transplant floor, since bleeding + petechiae can be early HLH symptoms. (Spoiler alert: not HLH. The “bloody” poop was actually red-colored poop which is a rare side effect of the antibiotics he was on for his UTI). However, on this visit he also swabbed positive for rhinovirus — you know, the common cold to the rest of the world, but a serious illness to James that has landed him back on oxygen 24/7.
So … yeah. J has been miserable, we’re not sleeping, and this week was Max’s first week back at preschool. All my energy is directed at the kids, poor old neglected ICU Dad (when I have a minute) … and not here. My bad.
Tomorrow morning J heads into his third (THIRD) eye surgery. We are running out of options for his right eye, which has still not responded to the previous surgeries as his left eye did (another piece of delightful news from the past six weeks). I’m heading off to get my sh*t together and put on my damn game face for tomorrow morning. Didn’t I have some kind of bootstrap picture from earlier in the summer?
Meh, F that. Ain’t nobody got time for amusing graphics right now. I’ll post tomorrow when J comes out of the OR. Assume a properly posed portrait to follow, as is our tradition. Fingers crossed he gets to go home by tomorrow night…and that he’s not in too much pain.
Oh, my poor dumpling. When will you catch a break?