Made it through the rest of the day! Infusion went fine. Met with the pulmonologist. He agrees with us (thank goodness) that Shelby's sats should be kept at 88%+ rather than 80%+ She really struggles to breathe when she's in the low 80's. It makes no sense to deny her O2 because then her body uses all its energy to work on her breathing rather than healing from surgery. So, we are to titrate her O2 as needed up to 6L. We think this will allow her to do more physically as it will reduce her running out of breath.
She got hungry during the end of her IV infusion and wanted french fries...and ate them all. Baby steps, but we'll take them.
I'm so tired. We have clinic again next week in the new hospital. :-) Happy 5 weeks together Shelby and your "new" liver!
In day hospital. She'll get her 2-hour IV infusion of pentamidine, an antibiotic to help prevent PCP pneumonia. She can't take the antibiotic they normally give so she has to have this. Liver stuff looked good. Some labs bumped up ever so slightly. Not a worry for one time. If they're like that again next week they'll have to investigate a bit. They suggested we stop giving her the pediasure for 2-3 days to see if her appetite comes back.
Labs now. Busy day full of check ups ahead...PFT's, liver clinic, IV infusion & then pulmonology clinic. Please pray all looks good.