This is so awful. My primary is six and a half months old. He was a CDH-er, was on ECMO. He almost got better in August and September, got him down to 30% CPAP, but went into respiratory failure at the end of September. Several runs on the oscillator later, he got trached last week. It's made him worse. He's barely double his birth weight. His head is enormous, and he has these skinny chicken legs. His SVC seems to be failing him, and his entire chest is covered in petechiae and burst capillaries. He's suffering. My unit (as Steve and I have been very vocal about on this board) undersedates ridiculously. The fact that I secured standing orders for q12 Ativan and q6 MSO4 last night is a sign of how bad it's gotten. He's so labile we don't even change his diaper unless he's sedated. They're tolerating PCO2's in the 100s. I bagged him for 25 minutes last night and counted a victory when his sats held above 75. His parents, who are the loveliest people I've ever met, are also members of a religion that doesn't hold with DNRs, and certainly not with withdrawal of care. I truly think they'd let him go if they wouldn't be ostracized from their close-knit community. He has four primaries, and all of us are losing our minds. We're all crying during and after work. The other nurses are starting to talk about us, and not in a good way. I don't know how much longer I can do this. We're talking about calling the Ethics Committee, which I have not seen done in the 18 months I've been on the unit. We're all talking about quitting, which we won't, really, but it is coming close to burning us all out. I've gone from 2 cigarettes a day to almost a pack. We can't not take care of him, though. His parents need nurses they can trust. Most of the other nurses can't stand the baby because he's so needy. We refuse to let him die with someone who doesn't care about him.
Thanks for reading, if you made it this far. I should sleep, because I have to go back and do it again tonight. May God forgive us.
