9:00pm update:
Job is now NPO. Nothing by mouth. We're so so sad, but that's nothing compared to how he feels about it.
The hope of going home without a NG tube seems nonexistent tonight. And SLP doesn't consult on the weekend, so we won't try to eat/drink again until Monday. I'm trying to think of this as two extra days of healing rather than two days of no progress.
He'll probably be off viral precautions in a day or two which would finally mean his brothers can visit him.
Though he's feeling better and more mobile and more himself, he's withdrawing into himself more and more. He's bored. He's annoyed. He likes to cuddle but has little to no interest in any of my stories or songs or games or silliness or efforts to engage him.
4:00pm update:
SLP came back and Job again aspirated 50% of the time when eating or drinking. She's going to leave the decision to the team, so we'll find out later today.
We also had our first transplant training! There are six transplant coordinator nurses and they divided the alphabet into thirds, so we have two nurses in particular following us (as we're in that last third of the alphabet) that we have gotten to know through the listing process and now transplant process. All six nurses and five doctors on the Heart Failure and Transplant team are intimately involved in Job's care. These two just especially. They're who I call first. They're the two we're closest to in this new TX family we're trying to get to know.
We sat for an hour and a half and talked about all sorts of aspects of his care. She thinks it's likely we'll discharge mid week next week, depending on how his echo from this morning looked, how his immunosuppression med levels stabilize and how his swallow study stuff all shakes out.
12:30pm update:
Rounds are later here on the floor because the team rounds on the CICU first. It's very different being on the floor and I knew it would be. But the transition TO the floor is so very complicated and I had forgotten that.
I'm thrilled that we're here, absolutely. But policies are different, the entire staff is different, expectations are different. We're on our own much, much more - nurses only take vitals very four hours and, if meds aren't due in between, we only see the nurse at those four hour marks (unless of course something happened/we called for them).
I've spent all of today in near constant communication with various providers, making sure all the nuances of Job's care are properly shared with the correct people. Little tiny emphases here and there actually make a big difference. Small miacommunications add up to big ones quickly.
And I'm advocating hard for help with his swallow and trying to explain years of concerns and interventions and pushing for formal studies to both help him get back to his baseline feeding and drinking and his speech delays.
I'd like to crawl in a little bubble and hide away from people for a few hours but that just hasn't been possible today and it definitely won't be possible next week. But the weekends here on the floor are very very low key. Almost nothing changes and only the most essential providers are on shift, so Job and I ought to have lots of alone time to recharge our introverted selves.
10:00am update:
Job is really struggling to take his two oral meds. SLP came by and I addressed that concern with her and we tried to give Job yogurt and honey thick liquids and he aspirated on both. I asked that she please please come back this afternoon when he's better rested and that's the plan. But I'm seeing the writing on the wall that he'll get his purees taken away.
He was really active all morning, playing and sitting up independently and interacting with people coming in the room.
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