I’m writing a real post about the planes and ambulances that Benjamin got to ride on, but in the mean time a quick update:
Benjamin had a good, calm day today. His blood pressure, sats and heartrate stayed nice and steady all day. He’s still not 100%- the lack of peeing means that now he’s peeing all the time to make up for it (though that is correcting itself) and he’s not eating (back on TPN for awhile) while everything gets settled down again. But he lost the “retaining water” bloat, perked up a ton, and has been rutching around like a wild man. I read him the first chapter from A Cricket in Times Square (he loved it), changed one diaper 3 times in a row (told you he was peeing a lot) and had a couple of good one-sided conversations. It will be nice when he starts talking 😉
They didn’t get as far in weaning him from the blood pressure medicines as they would have liked because he’s being really sensitive to any changes, but he’s on lower settings than yesterday with a strong BP, so that’s something. After such a good, postive change overnight I’m feeling confident that he just needs more time to settle down and not be messed with too much. All of his big re-tests are done (echo, sonograms, blood tests), so hopefully a couple of quiet days will get him to his happy place.