The schedule from last night:
11:00- go to bed
11:55- cares with primary nurse
12:10- cares with CA
12:50- kid wakes up screaming
1:45- kid wakes up crying. I cried.
2:30- kid wakes up. Again.
3:30- nurse wakes me up to try and feed Piper while she can. Result was unsuccessful.
4:00- cares with primary nurse. After so many times going to sleep to be woken up a few minutes later, I’m UP from this point on. Decide to do sudoku. In the dark.
4:15- cares with CA
5:00- Piper’s up. Bright-eyed and bushy-tailed, and looking for breakfast. <<sigh>>. At least she made it happy- she was laughing, talking, and blowing raspberries.
Unfortunately, when we tried waking her up at 3:30 for something to eat so that she could be NPO for 8 hours prior to the MRA, she was going to have nothing to do it with. She never even opened her eyes, and just kept looking for a place to put her head down.
So the opportunity for nutritional fulfillment was missed. Which was going to make for a very fun morning of waiting until noon.
We decided to take a walk around the grounds to try and waste some time. We cleared it with the nurses, of course, and we left. We came back about an hour later because I was hoping Piper’d take a nap, only to find out that we were going to be quarantined to the ward because the doctors were so worried about her airway that they didn’t want her to go into distress somewhere else in the hospital. That’s reassuring.
Piper really did fairly well, a lot better than yesterday, with the NPO bit. So that was a nice reprieve.
For the MRA, they had to give her TWICE the amount of anesthesia they did yesterday to get her asleep enough to be able to control her breathing- for this test, they have to hold her breathing at precise times to get the best pictures. So she was one groggy girl this afternoon. She got to eat dinner at about six (so she still went 22 hours without eating), so hopefully she’ll be happy the rest of the night.
The ENT docs did rounds this evening, and we got absolutely ZERO new information. They said that the MRA hadn’t been read by the radiologist yet, and Cardiology hadn’t made any recommendations yet, because they wanted to wait for the echo that’s scheduled for “sometime tomorrow”.
So, I guess the plan is still very much up in the air. There’s talk about transferring us to the cardiac floor tomorrow, if they keep us, which I’m a little bummed about because I have LOVED the nurses on this floor. But at this point, no one’s committing to us staying or coming back for surgery later on. The nurses all seem to think that we’ll be sticking around until at least the severe part is cleared, but any time I ask a doctor, it’s the “let’s see what the ________ team thinks” line. I don’t think that anyone is willing to commit to anything.
After the second intubation in two days, she sounds pretty dang nasty, so that may up our staying power. But I guess we’ll see. I’ll be pretty surprised if we get to go home, but my own bed would feel kinda nice. Pros and cons to both, right? Just so long as they think she’s safe, I guess.
Thanks for keeping Piper in your thoughts!!!