June 9th, 9amish:
Last night Scott started clearing up nicely. We tucked him in after keeping him awake during the day as much as we could (so that sleep really well at night, Lord willing), and headed off early to sleep. Apparently he woke up about 10 minutes later and struggled all night because we weren’t there. We are hoping to switch to a private room [when we leave the ICU] where we can stay with him. I think it’d make a world of difference.
Apparently his night nurse, Aaron, was really rough and unkind with him. Scott was also coming out of some out-of-touch days, but Sarah, too, had troubled thoughts about this nurse in particular. First time we’d ever had an issue with staff. We were glad it was just the one night with him.
By late morning, Scott was seeming less confused and scared. He’d get random 30-60 minute fogs, where he was talking nonsense. When we left to grab a bite in the cafeteria later on in the day, for dinner, we were gone thirty minutes and came back to Scott lost in confusion for a bit. It seemed that whenever we’d leave, he’d slip away until we reined him back in to reality.
As the morning progressed, Scott showed signs of shortness of breath. A chest x-ray showed fluid in his lungs. They gave him a diuretic to help relieve some fluid. The days ultrasound showed his shunt flowing nicely. His bilirubin (and other) numbers were nicely up in his lab report. Definitely making progress!
just before 1pm:
Scott just had a visit from Physical Therapy! They gave him a few small bed-exercises and had him sit on the edge of the bed [for moments at a time] – a huge step in the right direction!
I’m not sure what the plan is for moving out of the ICU (nor am I stressed about it), but I do know he is being assigned a “sitter”, so even if I’m not there, someone will be by his side constantly. I think this will help even if we can’t sleep in his room.
He’s definitely returning mentally, too. He doesn’t seem confused [as] much anymore, tho’ has definitely lost a lot of time, and we try to constantly talk to him about what’s going on, [a little of] what happened, etc…
This afternoon we turned on some funny television show to entertain us all. Scott laughed until tears were streaming down his face. Sarah and I kept looking at each other over him, asking (with our eyes): “Is this okay? Should we turn it off? Is he going to bust a stitch?!” Scott was still hazy, tho’ more in a silly, familiar way now. Less aggressiveness and fear. Still some obvious questions, but with so much more clarity. He got super sappy with Sarah at one point oozing his love toward her wonderfulness for not only being here, but being her. He still has no voice, but has just enough of a breath to be able to emit slight sounds if your ear is literally touching his lips.
he looked at Sarah and told me, as if in our own bubble:
I love her.
I said, I love her too.
He smiled contentedly.
As the evening got later, the ICU staff made it clear Scott was in a good place to move to “the floor” (recovery). We were told there was a shared room available, and that he’d be moving shortly. I panicked inside. A shared room meant we can’t stay with him over night. It meant he couldn’t have familiar faces around unless for short visits, and when it was okay timing for his room mate, etc… It meant a lot of scary things for me. Feeling out of oomph, and not sure how to fight this (I mean heck, there is only one bed available, right? No amount of arguing can fix that…), Sarah went at it, without me knowing at first. It’s one of the (billion) nicest things she’s ever done for me.
The coolest part about Sarah’s talking to them was that not only did the nurses listen, but they took her seriously, and went into action to work within our wants. I have no idea what they did to make it work, and know they worked their patooties off to do it, but around 11 o’ clock at night, one of the two (of 20+) single rooms on Floor 4 ‘became available’ for Scott. Praise God!
We took our second (and final!) trip down to Floor 4, where Scott would spend another 2+ weeks recovering. Because he had a night nurse, and the room wasn’t mondo, Sarah and I got Scott comfortable and ready for bed (hoping he’d sleep), taped some pictures of the family on the wall by his bed, and left for Julie’s to spend the night. Happy to be heading back to a recovery room NOT in the ICU the next morning. Leaps and bounds.
Up until this point, we weren’t able to have paraphernalia in his room, so we only showed him pictures and video clips that Papa had sent of the kids from Sarah’s phone. One in particular, he showed to every nurse and doctor that we ran into, starting in the TICU. He was so proud and happy to see and hear them.
(video coming shortly)
Preserving the Harvest 
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