Are we there yet?

Just when you think you can relax, something happens to throw things back out of whack. Nothing terrible – Skyler is fine. But all three of us had one of our most stressful days yet of this whole ordeal.

The PICU got so full today they had to bring nurses down from the NICU to help with staffing. And, there have been several high risk cases come in the past couple days that they keep moving Sky’s assigned nurses over to those cases. Unfortunately, today Skyler’s nurse was one from the NICU, and she felt more to us like a substitute teacher that didn’t know what was going on. She had one other patient, which since Sky’s surgery, her nurses have only been assigned to her so they could focus and keep close tabs on her blood pressure. This nurse’s other patient seemed to be pretty demanding because she was barely ever in here, and when she was, she showed very little confidence in what she was doing. Things started to go downhill when she asked us if we thought Skyler needed some pain medication, and then she asked us which kind she should give her. Tylenol, Morphine, or some other anti-aggitation medication. Ronnie answered her with “Well, I’d probably be able to make that decision for you if I had gone to nursing school, but I didn’t so shouldn’t you be able to decide what she needs?” Ronnie and I looked at each other in confusion wondering why we were now in charge of her medications. Last we heard, they were supposed to keep her on regular pain meds to keep the pain under control so she wouldn’t get upset and work her heart too hard.

But it got worse. Ronnie and I started to notice her blood pressure and heartrate increasing steadily throughout the day, even while she was sleeping. This just didn’t seem right since they had put her back on her medicine that morning to bring the numbers down. We were surprised the nurse hadn’t noticed yet or anyone else for that matter. We finally alerted the nurse and asked if she could check things out and see what was going on. She took Skyler’s temperature and said “huh, not really running a temp. But I’ve gotta go to the patient next door and suction out his airways.” And she left the room. Ronnie and I got very upset – she saw her numbers were wrong, but basically did nothing about it. I went to get another nurse or doctor, and luckily a member of the cardiac team was making her rounds, so she came to check out Skyler. She said her numbers were definitely too high, especially for sleeping, and that they’d probably need to increase her meds again. She said she’d get the head ICU doc to come right away to confirm and make the orders. I also told her our frustrations with the nurse so she said she’d send the charge nurse our way to talk about it. Meanwhile, the head doc came over and said definitely to increase her meds, and he also ordered a chest x-ray because her breathing was more labored than recently. She was doing that grunting thing again that she’d been doing when we first brought her in. Luckily the x-ray showed her lung function was actually better and the breathing treatments were working. Next her surgeon came by and assured us everything was fine and this was normal as they try to wean the post-op babies from their medicine. He said she may need to stay on her IV heart meds for a few more days to help her heal. Ick – that means a few more days in PICU with it’s awful visitation policy and sleeping arrangements!

The charge nurse came to talk to us and we told her up until today, we’d been very confident in our nurses. We told her we shouldn’t be having to make her medication decisions when we don’t even know how often or what dosages she should be taking! And, we thought someone else should’ve noticed her blood pressure getting out of hand before we did, like, maybe her nurse? She understood and said that she and the other charge nurse would keep a close eye on things the rest of the shift, and that tonight, the PICU was fully staffed so our nurse would be one of the regulars. We really hoped it would be a nurse we’d already had, but we weren’t so lucky. However, this nurse seems really on top of things and promised she wouldn’t let things get out of control. Oh, and she actually acts and sounds confident. How refreshing!

We are now on our third roommate in two days. They just keep moving other RSV babies in and out of here like it’s going out of style. We’ve been so nervous that since Skyler hasn’t had RSV bad at all, that what if she could catch it again or catch a different strain from one of these other babies in here? But the nurse assured us they would not put her at that kind of risk after heart surgery if that risk existed. So we just have to trust her and hope it’s not just lip service because the PICU is full and they need bed space.

Doesn’t anyone here realize that Skyler is the most important baby here?????

Needless to say, after a day like today, we will not be leaving to go home and sleep tonight. Ronnie sat himself in the chair next to Sky’s bed and said he’s not going anywhere!