An adventure

I’m not quite sure how nearly two weeks slipped by without an update, but that length of time indicates how dull and uneventful the hospital routine has become overall. Brad continues to improve very slowly and incrementally. He is eating a little more, though still is on full intravenous nutrition. His doctors and the dietitian do feel that he is absorbing a little more of the nutrients in the food he’s eating, and he is finding a few more foods appealing. The next step, when he’s eating more, will be to decrease the IV nutrition and increase his diet. I have been given a lot of handouts on what people with gastrointestinal GVHD should eat (the short version: mostly bland, easy-to-digest foods, not surprisingly). Overall the progress has started to be steadier but remains very slow.

There has been some news, though unfortunately overall not much improvement, with his eyes. We were all growing increasingly frustrated with slow, spotty, and uninformative responses from his eye doctors and so we all (Susan especially!) pushed the doctors for more clarity. After many, many consultations in which ophthalmologists ever higher up the food chain were called in for consult, it was determined that the Prokera rings he had in for several weeks were obscuring his vision rather than helping it. The steroid eye drops that were meant to treat his presumed ocular GVHD were, instead, obscuring his vision; the prednisone in the drops was precipitating out onto the lenses and clouding them.

On Friday, after several eye-doctor visits, he had the Prokera rings removed. Underneath, the ophthalmologists could see that damage to the epithelial layer of the cornea remained. However, after exams they concluded that it might not have been ocular GVHD at all; instead, their new working theory is that he has a viral eye infection, which they are treating with antiviral eye drops (no more steroid). We’ll see if those help. At first Brad was very, very optimistic about this change and got a huge boost from the removal of the lenses. While his vision is somewhat improved, however, it’s still not clear enough for reading, writing, or recognizing faces. That said, he has a little more functional vision for operating independently in his room, and there’s hope that more vision will return if the drops work as the ophthalmologists are hoping. Meanwhile, his nursing team has arranged for him to get occupational therapy to help him function more effectively despite the limits on his vision.

In other news, Brad has been cleared for (and is up for) more walking and has even been able to go outside—not just outside of the room, but outside of the hospital to feel a bit of fresh air. Doing so involves him suiting up in a disposable gown, a paper cap, a mask, gloves, and booties and, though he walks in the halls and while outside, he takes a wheelchair down in the elevator. Yesterday I wheeled him down, but by the time we got there a sudden and very breezy rain shower had started up. We went out anyway, but his hat quickly blew off and there was no place to be outside and shelter from the downpour, so we beat a quick retreat. However, Brad sat for a while in the vestibule at the hospital’s main entrance, where he could feel the breeze and some fresh air. When we got back to his room, he called it an adventure.

 

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