1/7 Holding Pattern

Nothing too scary is happening. We’re in a bit of a holding pattern. There are some good moments sandwiched between the vomiting and retching and more bad-feeling episodes. This morning Josie was up and at ‘em reading books and chatty, but in the afternoon that was replaced by a hurting tummy and no interest in doing anything fun. Lots of tummy complaints and a need for additional pain medicine. Then later in the evening she was better, but still had a 101.4° fever and 160 heart rate.

Josie’s hemoglobin was down again today to 7.4 gm/dL. They decided to not wait any longer so they gave her a transfusion of fresh packed red blood cells. I missed my predicted infusion forecast by over a week. Maybe I shouldn’t become a doctor after all. New prediction…one more infusion on the 25th.

GI was by and decided that with her recurring infections and because of the continued refluxing and draining feeds, even at a sub-nutritionally-optimal dose, that Josie will need to go back onto TPN (IV nutrition) starting tomorrow. They’re afraid she’s simply not getting enough calories with the feeds which are actually entering and going through her system. Once the TPN starts they’ll then cut her feeds to a point where she doesn’t appear to be refluxing any longer.

GI also wants to do another nuclear study on her liver function this time. They want to see her bile production process and then where that bile is going. It doesn’t appear Josie’s bile is going anywhere because the drainage out the JP surgical drain and the duodenal drain is not bilious…just looks like gastric juices and feeds. This study will help rule in or out a bunch of things and confirm if her bile issues are causing her bilirubin levels to remain high. Makes me wonder if this kind of test should have been administered a while ago or if this is just window-dressing information.

More tomorrow.