Job hasn't been sleeping well because of vitals every four hours, his steroid prednisone, some explosive night diapers, general post-surgical discomfort and disorientation... They started melatonin a few nights ago and that has been a great help but we really need to get his steroid dose moved to the morning. Moving med times from whenever they were ordered in the CICU to times that are reasonable to give at home is a big reason we stay in the step down ward for a while post-op, and it's a process because the med time can only move by 20%/day. So tomorrow Job will finally get his steroid in the morning which will then really help his sleeping at night.
All of that is to say neither of us have been getting great sleep this past week at night, so we took a great afternoon nap, all cuddled up on my bed. We were woken up a few times for lab draws and then we'd snuggle together again and Job would smile at me while we fell asleep again. It was wonderful.
Job cracks me up with his poses. He still gets worn out pretty quickly and then leans against whatever is close by:
And we've enjoyed sitting at the window. No more Lake Washington and Mt. Rainier view - we're now looking out to the garbage collection site, but sometimes we get to see trucks and hear them beeping.
Child Life brought cars and tracks and Job has been really enjoying a new rotation of toys.
1:00pm update:
We had another serial panel today, this time for his valacyclovir. So the nurses were in our room a lot again, as well as the resident and attending, but I'm shocked again at how helpful a slow "lonely" day was for both of us. I've been an introvert all my life but I still somehow forget that people exhaust me sometimes. And it's not at all personal, of course. I'm so so so thankful for the (already!?!) hundreds of providers we have seen this hospitalization and for friends and family pouring into us. It's been wonderful. But it's also been really helpful to shut off my phone today and pull the curtains on our room down and mostly just hide out with Job.
We listened to a lot of beautiful music and did crafts and read books all morning, plus the weekly line change fun for which we wore our matching masks.
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