June 26, 2016

Zeke has had a rough day. He's been doing awesome, and they were seriously talking about extubating him, but he kind of crashed last night.

For the past couple of days, he'd been doing fairly well, and he was down considerably on his vent settings. He was down to a pressure of 18/5, and a rate of 20. He'd had very few issues with his vent or the dialysis pump, and things seemed to be ok. His blood gasses were ok but not great, but not enough to up his vent settings. He was on a low dose of Fentanyl, but hadn't required many PRN doses. He'd been awake and alert, and we all felt confident that he was good.

Last night around 11pm as I was leaving, his blood pressure was fairly low (low 30's - they want it to be 40's-50's). We'd just given him his bath, changed his bedding, and had been messing with him for a while, so the nurse said she'd keep an eye on it and call me with any issues.

I woke up to a voicemail (I didn't hear my phone) from around 1am. His bp had stayed really low, and had gotten worse (low 20's), so they put him back on the max dose of Dopamine (20mcg/kg/hr) and given several saline boluses and doses of albumen and platelets to try to get his bp back up. It's stayed low pretty consistently throughout the day. They just decided to leave 10 on with dialysis this hour, and go to leaving 5 on an hour after that, and see if it helps. They're trying to avoid putting him on more bp meds.

Last night they also sent blood cultures to check for infection. One came back positive, so they repeated it again this afternoon to rule out error. They put him on more antibiotics (he's on vancomycin, ampicillin, tobramycin, and cephalosporin) to catch whatever infection he has.

Surgery came in early this morning and tried to flush the drains in his small intestine, and neither would flush. His abdomen feels a lot harder than it did last night. He also hasn't had really any measurable urine out of his mucus fistula in almost two days, which is concerning. Urology hasn't come by today, which is frustrating.

They did do an xray this morning, and it showed some dilation in the bowels, but it didn't look like there was any extra fluid or anything in his abdomen. They haven't done an ultrasound to verify, though, because I guess they're waiting for urology? They need to figure out what they're going to do about either placing a new superpubic catheter, or doing something to drain his bladder.

I was really apprehensive about them stopping his antibiotics last week, and asked if they could keep him on a mild one as a precaution, since he has the drains and everything else, but they said it wasn't necessary.

I'm so incredibly frustrated right now. I feel like because it's the weekend, things aren't being treated as urgently. It may just be me being a nervous mom, but I want to scream. It's so hard to go from doing so well to going back to this, literally overnight.