Today’s Clinic visit

So we walk in, and there’s a Gesco setup in the room. And I think surely that’s not for us… or maybe it’s something else? Nope, it was for us.

Last week, when we flushed Teddy’s catheter at the clinic, they pulled out a few syringes of red fluid. Nobody really said much about it, but I could tell our nurse was concerned. (If you’re reading this, Jen, you use this ultra-casual manner when you’re worried… I’m totally on to your ways.) It could be nothing, it could be something. (um, like it could be lodged in one of his internal organs again.)

So in an attempt to ascertain whether it was something or nothing, our nephrologist decided to do a few dialysis passes in and out to see if it was all working right.

(Teddy doesn’t like this process. I’m sure it feels strange and uncomfortable.)

And it’s not. Fluid goes in just fine, it just disappears into his body somewhere and does not come back out. We tried everything, too. Sitting up, laying down, reclining, left side, right side, belly, me holding him left side, right side, belly. I offered to hold him upside down and shake him, even. Nothing. Not a drop.

So, up comes Xray. It looks OK to us, but they couldn’t find an image of it from when it was placed to compare it to. There’s a chance it’s migrated north of where it needs to be, and the fluid is settling into his pelvis and the end of his catheter is too high to reach it.

Teddy was hysterical from all of these goings-on, so we let him calm down and then Dr. Jetton pulled up a chair and everyone (including the social worker) kind of sat down in front of me and Dr. Jetton had on her worried face. Uh oh.

The current plan is this:

They’re going to talk to Dr. Pitcher (surgeon) and see what he thinks about the catheter. Current thinking is that it needs to be replaced. If so, they will see about tag-teaming him and doing the tubes/ABR and then the catheter replacement all at the same time. (I’d like to see THAT work out…. not holding my breath.) She suggested the stars were aligning and I suggested if so, they were aligning in a crappy way. (However, I am NOT willing to compromise on the tubes/ABR. I’m tired of this dragging on. I want to find out the status of his hearing now – not later. I don’t feel there’s room to mess around with it any more – if there’s a correctable problem, we need to get correcting it.)

Then, in an effort to keep this from happening yet again, we’ll start dialysis. Not because his labs are bad (they’re looking really good for him), but because of his stinky catheter migration problem. There’s no guarantee that using it daily would keep it in place, either.

I can sort of get on board with this, and I don’t have time, space, or energy to get into it. But I’d still rather not. If his labs were bad, absolutely. But starting dialysis because of his catheter seems like a crappy reason to start.

(For background purposes, they feel that chances are good that one day, he’ll just need dialysis. We’ll notice he’s puffy or he’ll stop making urine, or some of his labs will suddenly be completely out of control and he’ll need to start and he’ll need to start right away. So we have the catheter in place for that eventuality. It takes a few weeks for a new catheter to heal up enough to really use it, so waiting to put it in on an emergent basis isn’t really a great option – it increases the chances of needing to do hemodialysis in the meantime, which isn’t the end of the world but isn’t ideal.)

I have several questions I’ve thought of since our appt that I’ve emailed and am awaiting a response to. And then I’m waiting to see what the surgeon thinks of the catheter and of the chances of replacing it on the 10th after his tubes.

If he starts, we’ll have a week or two of training, he’ll be inpatient for a while to get up to full volume, we’ll have to have the kids sleeping over at Aunt Kelly’s for a week or so, which will be stressful for them and probably for Aunt Kelly, too. And not to be all self-centered, but it looks like I’ll be spending my birthday in the hospital, yay me.

In the meantime, his labs were great. His creatinine keeps creeping up (2.7 now, whereas it had been hanging out around 2.2), but they said that’s kind of expected as he grows and has more muscle mass. There’s evidently not a cutoff for creatinine like there is for BUN. (BUN is harmful over a certain amount and they will start dialysis if it gets too high and doesn’t come down.) They increased his intake – again – to 1050/day. Sigh.

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