Still Hangin' in There... Barely

It's been another frustrating day in the PCICU. Chase had to go back on oxygen last night around 4:00 AM. He was taken off the oxygen again this morning around 9AM and is still currently off the oxygen. This last hurdle is proving to be a BIG one. In the meantime, hubs and I are beside ourselves with frustration. We have no control. We understand we have no control over Chase and his body's ability to utilize oxygen and we're okay with that. We're on his schedule. He's in charge. What we're really irritated about is having NO CONTROL over our circumstances. We're stuck in the PCICU. We've been "floor status" for 3 days, which basically means the only thing the nurses do is check vitals every 4 hours and occasionally play around with his o2 levels. It means we're ready for 7C. The private room where WE'RE in charge. In the PCICU, we're subject to a complete and total lack of control. We can't control the noisy beeping at the baby's bedside next to us. We can't control the cleaning lady that has apparently found the absolutely loudest way to open a new trash bag when emptying out the trash. We can't control the guy cleaning the floor with the loudest machinery known to man. We can't control the nurses who approach our bedside using anything but their "inside voice" while Chase is obviously sound asleep. We can't control the fact that apparently are no beds for us on 7C.

Just a bit ago I was at my wits' end. Chase was sound asleep in my arms. It was about 1:30 PM and he wasn't due to eat until 2PM. This has been a challenge in and of itself because we again have NO CONTROL over his schedule. We try to get him on an eating schedule since I'm nursing him (and this affects my pumping schedule), but we can't do anything when the night nurse decides to feed him every 2 hours and ends up dumping several ounces of my hard-earned breastmilk. Anyway, so he's not due to eat until 2PM and I'm doing my best to keep him on a schedule during the daytime while I'm here with him.

The staff starts prepping the bed next to us for a surgery case that will be rolling in soon. Hubs approaches a nurse to ask her when the case will come in so we could make sure I can be there to breastfeed Chase at 2PM. She said I needed to go ahead and do it now so she can clear the PC as the case will roll in at 2PM. So therefore I was forced to wake my sleeping, heart-surgery recovering baby up from a much-needed nap and force him to eat 30 minutes before he was ready to do so. This made me MAD. Then, because hubs happened to ask the nurse a series of questions, we stumbled upon the fact that the nurse we had all day (and for the past 2 days) was being assigned to the new case rolling in, and Chase would be turned over to the nurse covering bed 2. What this means is that while we would be gone (kicked out of the unit while the new surgery case rolls in), a totally different nurse (and one in training with her) would take over Chase's care, without so much as a single word to us or apparently, without much of a report from our existing nurse (as she was focusing on the new case). This made me MAD. The complete lack of control, the complete lack of communication, which could definitely have an impact on the care and well-being of our son, the apparent lack of respect we are receiving as parents...

I am MAD.