Moving on up....to the east side...

We are moving over to the floor sometime today. This is really good news because that means he is doing that much better, but I am nervous because it will mainly be me having to tell him no about drinking now. I have kinda just stayed back or left the room during his fits the last couple of days and let our nurse handle him, but on the floor our nurse will have other patients and cant stand in our room all day telling Sam no. We are going to let him drink some of the formula we have been tubing. This will increase the amount he can have by mouth a day because we will just cut down what we were giving him by g-tube. We also figured out the math that he can have a half a popsicle every two hours, which is a pretty good schedule, plus what formula he is allowed to drink. I never thought he would be drinking his formula by mouth, but he just downed 50ml! He is still on a continual infusion of milirinone through his pic line, but maybe sooner than later he can switch that back over to his captopril. I will try to update later today once we have moved and are settled. Say a prayer about our move...I am very nervous about a roommate, and about the whole room situation over here. If he is on the B side of the room he will be in front of the sink, which is a disaster, and if he on the A side and has a roommate he will freak out if he sees stuff to drink carried in the room. It is killing me because I am sure I won't be able to give him a bath until we are past this, (you know how I am about baths!) thank goodness he got one night before last. He is very creative in trying to get water...grabbing the wipee you are wiping him with and trying to suck it, disconnecting his oxygen to get the water that humidifies it, and trying to grab the meds from the nurse to drink them, etc! I am sure we will figure something out to get him through this :)