Thursday 25 June .....Learning to Wait

Still in the woods perhaps, but I don’t want to leave you the impression it’s a trackless wilderness or something. Actually there are quite good objective measures that show continuous improvement in the patient’s condition. Bowel and bladder function returning, physical discomfort is lessening, stamina increasing, walking, reaching, coughing, getting in and out of bed, eating, are all getting easier. But sitting with him from moment to moment can be disturbing, boring, anxious, or fine, depending on the wild swings in apparent condition: sometimes he’s just completely out of it, and within an hour we cn be comfortably walking 14 laps around the floor. White counts and fever are down again this morning, another tube was disconnected (the pain button, no longer needed), but he is completely listless, seemingly overmedicated. He’s decreasing the pain meds again, and we hope to see more liveliness.

I’m learning some additional categories of patience, especially with respect to rhythms of the hospital, of recovery from major surgery, and the extent to which things can be accomplished efficiently in this situation. Improvements can be seen, but nothing happens in a straight line; nurses and doctors respond, each according to their job requirement, but not necessarily as the patient or caregiver wants it to happen. Urgencies are dealt with quickly, but what is truly urgent depends on what you are trained to know.

We’re still waiting for a bunch of reports to try to explain why Josh had fevers and other signs of infection when none could be easily found. Another kind of waiting- for an infection to “declare itself”- so they know what to treat, if anything. Could just be from the spelenectomy, or from the suspected pneumonia, or ..?

And we are also waiting for the big pathology report. The tumor is being sliced and diced and searched for what-all’s in there. Preliminary indications were good- only teratoma and necrotic tissue was found in the first samples. I imagine a guy sitting in a freezer faced with a mountain of thin-sliced mozzarella cheese. And he has to look at every slice under the scope, trying to find the joker.