Well, today was a lot of nothing going on which is good. They continue to take the setting of nitric oxide down on the ventilator. His blood gases came back good still, so they think they will wean it down a little more tonight at rounds...which will be about midnight.
He is twitching a lot, the sedative isn't working very well anymore...he is out but not fully. They think he can hear what is going on around him so we still are not touching and whisper....he is going to be so mad at us when he gets up.
We have turned a corner in there is more output of pee vs input...awesome!! Dr Del nido is on the floor but we haven't seen him yet, not sure we will.
We had a few visitors....thank you to Michele for sending out emails to the area Down Syndrome Congress. Jessica and Dawn came by, both have DS girls..both had heart defects.....it was so nice to see a smiling face. They brought comfort food CHOCOLATE....and a book and shirt that says Cape Cod on it for Tuckman. Also a gift card for the pastry place in the hospital....YUMM! We also got to see Johnny's mom Trisha. They are on the ICU floor as well. Johnny came from Cincinnati for a heart transplant,,,,,NOPE, Dr Del nido fixed it instead. (he will require one more surgery to fix a valve that leaks..but that is nothing) I have been following his story for a while now and knew they were here. She let me know the very first night she had BAGS of comfort food and to come down anytime we could have a junk food night....so nice, people are so nice and caring. It is just amazing. Tucker has brought out so much good in everyone....
We got out and wandered for lunch and dinner tonight since they told us we should take advantage while we could. It seems Tuck doesn't want to be asleep and is fighting it. Soon he will be awake and we will not get the chance to wander....so we found a book store. All of us girls have read one book already and have started new ones. We found a pub where we ate and Todd tasted the local beer...then it was back to the room. I am OK for a little bit to leave but I am much more comfortable being in here with Tuck, even if nothing is going on.
I haven't taken any new pictures of Tuck. Nothing has changed but as soon as things start coming down, all the pumps and stuff....pictures will be pouring in. It is great to see the pumps slowly be discontinued. The room looks tiny now but will be big again as soon as it starts.....so in the meantime i am posting pictures of Tucker's flight to His Whole Heart......he did very well on the plane. One picture is of him with his earphones on, listening to his signing time music, and another is of him after his heart cath this week.....sleeping like the angel he is.
I cant thank you enough.....keep the prayers coming. We have a ways to go yet. HUGS TO EVERYONE!!!!