Dec 13-16

Teddy Teddy

This week, we are in a holding pattern, waiting for the PD catheter to heal and waiting for him to grow. He’s back down under 5 lbs now.

Some nurses have been unable to get the broviac to draw. This is important, not only because I don’t want him to have to be poked more, but because potassium really needs to be drawn via a vein, not a heel stick, in order to be accurate. The process of a blood draw via vein is terrible and lengthy and they’ve blown out everything in both of his hands and the one foot that doesn’t have the picc line in it. I’ve been telling them that the trick is to push his shoulder forward, but the night nurse would not listen. The day nurse, however, did, and she got it to work fine. The nephrologist on rounds today said that, often, it’s because they have the baby’s chest propped up (like with padding under their upper back) and their head turned away when they put in the line, and so it will sometimes only draw when you replicate that position – which is EXACTLY what we’ve had to do to get it to draw. So, mystery solved, and as long as that info gets passed along at each shift change, or I’m present for all blood draws, it shouldn’t be a problem.

On Wednesday, they decided he needs more oomph, more liquid, and more salt in his feedings. His NG tube went back in, which is actually OK with me, because it means they can give him his salt supplements via ng instead of orally. Also, they decided to supplement the breastmilk with Similac brand PM60/40, which is some sort of special formula. I hate that.

They’re also going to put him on a minimum amount of food. Originally, they said 50 ml every 3 hours. That’s more than he has consumed in a single feed, ever. I think that’s actually larger than his stomach – I looked up how big is stomach probably is at this age and I’m pretty sure it was less than that. I protested and asked why not feed him whenever he is hungry (every 1.5 hours today), so they changed the order to eating whenever he wants, but a shift minimum. So at the end of a certain number of hours (8), if he hasn’t eaten “enough,” then they will give him the rest of his food via ng tube.

He also has been having desaturations, which means that the amount of o2 in his blood dips kind of low. When he’s asleep, he does periodic breathing (he breathes really really shallow for a period of time, then back to normal) and that makes the o2 drop. They were not concerned at first, then it got worse, and now they’re concerned. Last night around 10, they put in a nasal cannula (the tube that sticks up in your nostrils a bit) to keep him breathing. He still had some desaturations, but not nearly as much. But it makes him really mad, and he slept terribly. So I slept terribly.

His sleeping breathing pattern

Cannula and NG

So they are a bit stumped about why he needs the o2 all of a sudden, but did a chest Xray, and he looks fine.

Warmer bed


By Friday, his charts now had pretty exacting instructions on how to draw from his Broviac line, and it was also starting to get passed along at shift changes that if you have questions, just ask mom. She knows about his complex diaper situation (he has two diapers, one for the nephrostomy, one for poop), she knows how to get the broviac to draw, she knows how to do the dressing on the nephrostomy.

He had his PICC line removed, and was down to: Broviac (in his neck, used for blood draws). Monitors (two sets). Foley catheter (for pee from his RIGHT kidney, so in other words, mostly pointless). Nephrostomy (for pee from his left kidney). NG (for feeding if needed). Cannula (for air). OK, that seems like a long list, but it’s MUCH shorter. And the NG and the Broviac aren’t hooked up to anything, so they don’t tie us down. The foley is only hooked up to the drain bag. Not bad.

His labs are looking pretty good. His electrolytes are bouncing around as they mess with stuff, but the BUN and Creatinine are slowly lowering. (creatinine is under 3 now, BUN is 42)

I think I’m less overwhelmed than I was last week, and have started to find my voice in all this. The doctors are very bossy here. I mean, they are clearly accustomed to being in charge and telling everyone what to do, and I am not saying that’s a bad thing… but though they ask if we have questions, they clearly don’t consider parents to be partners.