Sunshine and Shadow

It's been a couple days...

A couple of very long days.

Scary, dark, hard days.

I'll be honest, some of it is kinda a blur. I think that's my brain's way of protecting itself. 

I mean, I know what's been happening, but there's just a whole lot, and much of it has not been good. Overview from a high level starts with low "soft" blood pressures, high lactate, CO2 being retained and his body's pH slipping. (I guess I detailed that in the last post.)

Anyway, that pattern has kinda continued off and on over the past few days. He's run fevers, hasn't tolerated any feedings, retained fluid and then released it all in a flood with lasix, and then needed more. This kid is incredibly sensitive to lasix so that's been a fun balancing game. 

The fevers especially have been concerning because they fluctuate, but they've been trending higher. He is back on IV antibiotics which seem to have helped, but mostly just blunting things.

We've been discussing some of the bigger guns, but it's hard because we don't have a good target. Last night I suggested that a sniper approach is great if we have a target, but since we don't, and it does appear to be bacterial, maybe we needed the carpet bomb approach. 

I'm not thrilled about using the really big IV antibiotics, but this kid just doesn't currently have any reserves.  I mean, shifting him in bed means he drops his blood pressures and sats. If an infection gets a good hold on him, we're sunk. Literally. We actually had the conversation the other night about how long they would code him if his heart stopped. That's a conversation that no parent should ever have, and yet, we did. I didn't sleep much at all that night. And I didn't leave his room much for anything. He was that tenuous. 

On the left, the banks of IV pumps. On the right,
the hospital vent and his iNO. This kid has all 
sorts of accessories. Under the light in the back
is the chair I "sleep" in.

But today, he's been on both antibiotics now for almost 24 hours, and we are seeing some movement. Paralytics were used 6 times on Wednesday, 2-3 times yesterday, and maybe once today. We're weaning a little on his sedatives, although he's still pretty deep. Blood pressure meds are a little lower, and we've been able to wean his oxygen down to 75%. Also, no fever yet today.

However, he has a loooong way to go still. He's only getting 5ml/hour of his feeding. That totals to 120 ml/24 hours. Normal is almost 1000/24 hours plus 450 of pedialyte. He's getting his pulmonary hypertensive meds every 2 hours instead of every 6.  He's got 7 IV lines running. Fortunately, several can go in together, so he's got 3 IV's in. Like I said, among other things, a long ways. 

But today, I finally took a little time for me. We're in a back room in the PICU with no windows. I have no idea if it's sunny or rainy or what most of the time. Today I got a salad from the cafeteria and ate it on the patio on the 4th floor. 

Sunshine.

Food for my soul.

Self-care. 

This is not easy, in fact, it's really hard. But through great support here and at home,  through prayers and love, we're doing hard things. We have before. We will again. The "hard things" may change, will change, but still, we move forward. 

Self-care and processing is a big part of being able to do that. 

Sunshine is my self-care, blogging is how I process. Prayer sustains me through it all.

"Life is a mixture of light and shadow, calm and storm, and it's all good." 

~ Susan W. Krebs