Job got another shower and we replaced his replicare and tagaderm on his cheek for his NG tube, which is at least a two person job. I've given all of his meds and feeds on time. I set up Home Care services (delivery of his medical supplies). I met the woman who set up the SCH transplant program. Dr. Nuri came by to check on us. I signed consent for tomorrow's surgery. I tried to keep Job somewhat entertained.
I started putting clothes on Job because he was getting cold (and I couldn't handle the heat being so high in our room) a day or two ago. The problem is that he thinks that means we should be going outside. He found his hat today and put it on and spent the next hour trying to get out the door or window.
1:00pm update:
Hallelujah! Oto made room for us on their schedule. Get this: for TOMORROW!! I thought we'd have to wait for mid to late week next week! Yay yay yay!
10:30 start time, so probably rolling to the OR around 9:00.
Child Life spent probably at least 90 minutes playing with Job while I talked to providers. It was so good for Job to get to engage with someone besides me and it was wonderful to not juggle kid and consent forms. Although, I have to say, in all the appointments we have had here, I have never once felt chastised for needing to take a moment away from my conversation with ___ provider to help/discipline/protect/guide ___ child. They do a lovely Job of including even fussy Job in our conversations about anesthesia risks, for example.
12:00pm update:
I started my 24 hour care just now, after rounds. So I have to ring for the nurse to bring me meds at all of our med times (1pm, 5pm, 9pm, 9am - easiest med schedule ever!) and then ring for her to tell her I started a feed (3pm, 6pm, 9pm, 12am, 3am, 6am, 9am, 12pm). When she brings the meds, I have to tell which ones are due and how much and, depending on the nurse, what the med is for. I change all diapers and bedding and clothes and all that regular ole kid stuff. I think I also have to change his dressings, but we'll see about that. Basically, they want proof I can keep him alive.
His transplant meds are very time critical so I have to be very prompt with my call button.
10:00am update:
'Roid rage. 😳😳😳
We'll be playing and having fun and then Job will get intensely and irrationally angry with me. Really really really angry.
He feels better in so many other ways - he's pink and breathing easily! It's amazing to see such a drastic change so quickly.
He's quickly regaining his baseline gross/fine motor skills and all around getting back to himself (besides the abrupt mood changes) and just looks really healthy.
PT came by and was really happy with his functional abilities. He'll build up stamina with time, but he's doing great. He walked to the fridge several times and tried to open it to get food, which was heartbreaking but impressive.
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