Remember how we were trying to wean Gracie off of her diuretics and how she tolerated going from three doses a day to two? She did amazing with that wean, how foolish we were to think she would tolerate going from two doses a day to only once a day. Within hours she developed that oh so familiar cough and within two days she went from 1/4 liter oxygen to 1 1/2 liters. After two days I put her back to the two doses a day and was even tempted to give her an extra dose of diuril, it took her 5 days to get back to her norm. I called cardiology on Friday and yesterday, Dr. Jou called to tell me that someone will be calling me from the cath lab to get Gracie in on Friday. I guess that is what you get when you can use frequent "flyer miles" :)
Dr. Jou and Dr. Su both think that Gracie has more collaterals that are keeping her from coming down on her diuretics (currently she is on 4ml's of bumex twice a day and .6ml of aldactone once a day, that's a lot for a barely 15lb baby!) Maybe this time around she will be able to come off of oxygen completely, even if it is only during the day. I have lofty hopes that this will be the case and then if she qualifies for a G-tube, maybe will actually get to have Gracie's face tube and tape free for the first time ever!