1/13 Ups and Downs

Not a lot of change today…much the same, except there was no appreciable fever for the first time in a long time. She felt kind of blue and crummy early on then perked up nicely in the late morning. Then a big 4 hour nap. She woke up for a sassy couple hours this evening, then a little turn south toward the end of the day. Her fever crept up above 100° for the first time all day

So it goes with the life of Josie these days. A series of ups and downs. The ups are growing and the downs are waning…it’s only taken a few months. I’d say she was feeling pretty good for 1/2 of the day which is good…better than before when she felt bad all day every day.

Infectious Disease was in and they liked what they saw on the CT scan…nothing remarkable. They want to take her off antibiotics since there’s no evidence of an abscess. Still CRP is up and all the fevers point to an infection, but there is no further supporting evidence. We’ll see how she responds to ending those drugs.

Surgery wants to see her on less pain medicine, and we agree. I think it’s good to challenge things. Josie is such a pain trooper that I think a little more discomfort as payment to get off those pain medicines is a fair price. Soon that discomfort should ease too and we can move toward a substantial weaning.

This week if all goes well we’ll have Evie and Trip tested for signs of any looming chicken pox outbreak. If they test out clean then we may press to get Josie home pretty soon, but as with every possible great thing we’ve planned for Josie over these last four months, something tends to come up – maybe we’ll get lucky this time.

Her bilirubin was a little lower today at 6.8 mg/dL. Not great but better. That liver is still a big concern for us. During Josie’s big Whipple surgery in February they plan to take a liver biopsy to give it a look under the microscope just to see if that’ll help them understand what the trouble is.