Hospital Update

This is Will’s seventh or eighth hospitalization since August. I think in that time the longest he has been home has been about two weeks. I guess this is what moderate to severe lung disease looks like. He just can’t seem to get stable or well.

In this last series, he was discharged on October 30 on two IV antibiotics and IV ganciclovir (to treat CMV). He was taken off all those medications on November 9 because his picc line was infected and had a clot (the line was removed that day, too). By November 11 he had a junky sound cough and by the 12th he had a persistent fever of 102 and his oxygen requirement had gone from saturating in the mid 90s on 2 liters to saturating in only the upper 80s or low 90s on 5 liters. That’s a pretty fast downhill and pretty frightening.

The ID doctors now think that Will coming off IV antibiotics must have coincided with the drop in his white-blood-cell count caused by the ganciclovir. (He was very neutropenic when admitted on Friday; and we expect the wbc drop with ganciclovir.) So, he had really almost no immune system at all at that point, and that allowed the bacteria to take hold again really quickly. The pulmonary doctors think this is a good a theory as any, especially since Will is improving on the (new) IV antibiotics they’re giving now.

The second theory is that the clot in him arm from the picc line caused a transient blood-infection (the blood cultures haven’t grown anything yet, but they can be really hard to catch) or that a small piece of the clot migrated to the lung and caused the new consolidation and Will’s other symptoms. The pulmonary docs are less interested in this but say that it’s possible. (It is, I think, the medicine docs favorite theory though.) Will is being treated with a heparin drip to get rid of the clot in his arm, which is the same treatment he’d have if the embolism theory turned out to be true, so, that’s that. The only way to know for sure about an embolism is to do a CT with dye and contrast, which Will’s kidneys couldn’t tolerate right now.

Possibility number three is that it’s a return of CMV; he did have a slight positive for CMV when tested on Friday (up from a zero on Monday), so that will have to be watched carefully. The CMV is looking like more a future concern though, not the current problem. Possibility number four is that it is aspergilosis. They were getting pretty concerned about invasive aspergillius on Sunday, especially since Will had been having sensitivity to bright lights. But, since he’s improving, and that sensitivity is going away, the aspergilosis concerns have sort of fallen by the wayside. Will was successfully treated for invasive aspergillius about 18 months ago. It’s a scary thing to have since the prognosis is not great; however, since Will is known to respond to the treatment it is at least familiar.

Possibility number five, as always, is that it is something totally different and new: new bacteria, resistant bacteria, new virus, or whatever. They don’t think it’s the flu (either type).

So, the current plan is continue treating with antibiotics, continue giving fluids and hope the kidney function improves, no bronchoscopy, await further culture/sensitivity results from the sputum sample and viral culture results from the nasal swab/lavage (which they might have lost and, if so, will have to re-do), and see how things go. Will’s kidney function is improving but still not back to his baseline (his baseline for kidneys is not 100%, it’s more like 50%). His anemia is all over the place; he did get 2 units of blood over the weekend, and that seems to have improved things slightly. His white blood cells are starting to come back now that the ganciclovir is stopped and he is being given GCFS again.

The other thing that will have to be worked out before Will can come home is IV access. He can’t have any more picc lines right now. So, the access options are either peripheral IVs or a port. The pulmonary doctors want a port, but everyone will have to be really certain that Will is as infection free as possible and healthy/stable enough to tolerate the port placement, which is semi-surgical.

So, how’s Will doing you might ask? He’s tired. Tired of being sick and in the hospital, and sad about moving a step or two more down this road of progressive lung failure. A port is sort of a big deal, it says: you’re at the point where you need medical intervention most of the time. He was happy to get rid of his port after his transplant. It’s hard for him (that puts it so lightly) to be at this place again. He’s very steady, but he’s also tired and sad.