Hospital update

So as you all know, we've been in the hospital since Wednesday. We spent Wednesday night in the PICU and were moved last night into the Intermediate Care Unit; the place most kids go after the PICU, but before they are discharged. It was a bit of a debacle (I'll explain at later date), but we are all settled in now. Originally our stay was going to be short lived, but now is kind of open ended. They started treating his infection right away which was great and thought they we could continue antibiotics at home, but when the cultures and cell counts came back late yesterday and this morning, it became clear that his infection is a lot worse than the doctors originally thought. Plus his immune system is weak again and his blood pressures were low. So we might be here through the weekend.

What we do know is that Stephen got a type of staph infection in his peritoneum. Possibly via his PD catheter or through the catheter site on his skin from his rash. They're not really sure. But based on the fact that his white blood cell went up just from yesterday, the original course of antibiotics isn't doing the job. So now they're giving him IV antibiotics and directly into his belly in the dialysis fluid. The pain concern is that the "bugs" have stuck to the catheter cuffs inside the wall of his abdomen and that we'll leave the hospital before it's all gone and be back again next week. And we certainly don't want that!

Last night they also tried to give him an IV IGG drip. He received one in the NICU back in February when his immune system was pretty weak. This past months, his labs showed that his system had improved so he didn't it. But they checked his IGG yesterday and it was low again. So last night they started the IV and it was to run for 8 hours. But an hour in, his blood pressure started to drop so they gave him some saline to bring it back up. But it didn't really work and he only got about half of the course. And we didn't get him hooked up to his dialysis until after 1 am.

Today they are running him on continual dialysis now until tomorrow morning around 8 am. Which is kind of crazy, but also good because I'm responsible for setting up his dialysis for him while he's in the hospital. Pretty crazy, huh? They don't really have any kids, let alone infants, on peritoneal dialysis, so the nurses aren't comfortable or know how to do it. Being the weird person I am, I did ask them though if something happened to me, how would they connect him? And they do have a back-up for that thank goodness.

So that's where we are now. I'm staying with Stephen in the hospital pretty much around the clock and Bill comes and goes when he can in between work and running home for clean clothes. So you can imagine we are wearing ourselves pretty thin. But I feel better today than I did a few days ago when we were at home and I knew something wasn't right, but didn't know what. And as usual, everyone here at the hospital has been so great.

Here are some pictures we took today with our cell phones. Stephen is looking great now, it's just his poor little insides that aren't doing so great.








Sorry can't get the picture vertical.