4/2

John was very alert this morning and trying really hard to communicate - in paragraphs, his usual form of communication! However, the lip reading is still nearly impossible for me so I can't report much. The night nurse says he mouthed he wanted to get out of bed and to go home. These both sound like very plausible statements from John even if we are not quite there yet while still hooked up to the ventilator and the continuous dialysis. Respiratory was able to put John on pressure support today; yesterday he was still too tuckered out for it. This is the beginning phase of weaning off the ventilator. Eventually they will be able to put a plug (there's a better technical term but I forget it) in the trach so he can talk and maybe even swallow. It will be great to be able to understand what he is trying so hard to communicate. Right now the spelling boards still require too much effort on his part but they will eventually be useful too. Once he can talk to us, there may be more to report than is appropriate for the blog but that would be a good sign of sorts too. Renal says since he had a hypotensive spell this weekend, they are not ready yet to try the intermittent dialysis but that will also eventually be in the future. They continue to pull off fluid through continuous dialysis in the meantime; the edema is much improved. No news yet on the new pseudomonas readings but the ceftaz has also been discontinued so we will hope that is a good sign. OT was in to see John yesterday and PT is scheduled to continue working with him. The Speech and Swallow team will also evaluate John but we may have to wait until he can be off the ventilator without distress like rapid respirations and rising CO2 levels. They did come to see him twice last week but he was too lethargic at that time for an evaluation. Hopefully his periods of alertness will continue; the down side of that is when he is fully aware he is also fully aware of the pain particularly of the very deep and extensive bedsore. I'm afraid the level of frustration will increase in direct proportion to the level of being wide awake but we will deal if that is part of the healing process. Visits from Michael and Meredith, and Zacchary and Sharon, and a very encouraging postcard from Seth and Rebecca were most welcome this past weekend. If you are inspired, please feel free to send a note and/or pictures to share with John until he is ready for visitors beyond the immediate family. That will be a while.