Confusion and delay

Once again there was confusion and delay surrounding the path that Riley's medical care should take. For days we have been hearing about how we need to reduce the diuretics (and finally did) to see if chest output would increase as a result. Today, however, we were told that we are not doing that. Instead he will stay on the three large doses of diuretics per day. Apparently the surgical team did not communicate with the cardiology team as to the best course of action. After we heard about this new plan (which wasn't part of the discussion during rounds), there was a heated pow-wow because others didn't know about it or agree with it. The surgical team has the final say. Sadly, if Riley had not received fewer diuretics in the previous days, his tubes would have been removed today.

The surgical team who made the decision said that if the chest output increased as a result of the lower diuretics, then putting him back on the diuretics would not necessarily have had any impact--as if we lost our window of opportunity for them to work. Anyway, after the tubes are pulled, Riley will continue to be monitored closely with x-rays and blood samples for at least a week or more. The x-rays will show if fluid is pooling under his lungs and the blood draws will determine if the large quantities of diuretics are impacting the levels of sodium, chloride, and potassium in his system. We're not sure if this monitoring can be done on an out-patient basis. Hopefully if the tubes come out tomorrow, we'll get a better idea of when we'll get to go home.

While Riley's spirits continue to improve and he (thankfully) seems to be his cheerful self, he told me that he was sad today. When I pressed him as to why he was sad, he said, "because I want to go home." It was really hard for me not to cry. I want him to come home too. He's been such a trooper through all of this--blood draws, chest tubes, round-the-clock temperature and blood pressure readings, constant pain, crappy non-fat food, limited mobility and energy, stitches, gauze and cream applications, large quantities of new medicines, and constant poking and probing--and now he's had enough. He just started talking about home a couple of days ago and he must be feeling that it's time to get out of that place. There's nothing we'd like more.