When I first walked into the room earlier today Job looked absolutely awful. He was cross-eyed, but his eyes kept rolling back into his head. He couldn't stop flailing his arms and legs, but his movements were so uncoordinated. He was feverish too. It took about two hours to calm him down enough so he could sleep. But thankfully, he finally slept well and eventually woke up in a more lucid state of mind. Making sure he gets good sleep will be a priority this week.
We (I use that term quite loosely) backed off on some of his weans because he showed us he's not ready to be pushed so hard. He did well all day on hi-flow and off of CPAP (yay!!). But this evening right before the boys and I left the hospital (siblings are kicked out at 8pm) he randomly desatted in his sleep. He immediately got deep suctioned which didn't help like it usually does, so he got an x-ray to check his lungs.
We're very concerned about his atelectasis (lung collapse) and even though the x-ray looked good (no re-collapse) the decision was made to put him back on CPAP to be extraordinarily careful. He'll probably stay on it all night just to give his lungs the extra support of positive pressure to make sure they stay open and to relieve some of the work of breathing while he's still weak.
I talked to the NP about it for a while because it seemed like a disappointing step back, but we can't push Job too hard. This is how CICU life goes, after all: one step forward, two steps back. An additional factor in the decision was the high acuity on the floor tonight. Job will absolutely get the care he needs, I have no qualms about that! If his nurse were to call for someone they would be there immediately. But giving him the perhaps unnecessary extra support of CPAP tonight will just lessen a bit of the load on the floor tonight as Job will (at least presumably) need less assessment than he would if on hi-flow.
I want to make note of the special blessing it was this week that Job's primary cardiologist, Dr. Files, was the in-service cardiologist in the CICU this week. Of all the possible weeks for him to be on the floor every day, I am so grateful it was this week. He knows Job best (although really there isn't anyone involved with hearts at SCH who doesn't know Job very, very well) and he is such a very kind and wise man. He took special effort to direct Job's care this week and I will always be so grateful.
Likewise, it was simply wonderful that one of our favorite nurses, Alena, was Job's nurse Tuesday through today. She even picked up an extra shift today, surprising me! to care for Job an extra day. I had teased that I'd call a Code Pink (missing persons) on her if she ever left the hospital and then she showed up again today!
I can't think of another nurse who could have been a better fit for Job's/our needs this week. She advocated for Job and loved on him and answered my million questions. Thanks to her careful and oh so patient teaching, I feel like I might finally be starting to understand where Job is at and how some of his meds work. And she even made him a mobile! She had discovered that Job really likes watching the live cam of the Monterrey Bay Aquarium jelly fish tank and shark tank and so last night she found these sea life pictures and cut them out and hung them for him. Right now he's too weak and tired to play with them or look at them much, but it was such a sweet gesture on her part.
There are many such ways that we were specially cared for this week, but those two people were a particular blessing I don't think I've mentioned yet.
If Job has a good day tomorrow I might just left myself start to feel cautiously hopeful about his prognosis!
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