These Days Are Just Difficult

Bailey woke up feeling good this morning after a pretty good night's sleep to see that the nitric oxide was down to 3 (weaning from 10). They were really trying to get her up to the Heart Center and, we did finally get here! We're in the heart center. That wasn't the end of it, though. By far.

She was nauseous and vomiting all day. We got up to the heart center about 2:00 or so (maybe 3:00 or so, I have recently lost all comprehension of days and time) and she was so miserably tired and worn out from vomiting that she finally asked for the combination of morphine and adavan that knocked her out for about 6 hours last week some time. She said all she wanted to do was sleep. Dr. D came up and stood with us for a while directing our nurse on what to give her and she ended up getting that combination. We were hoping she'd go to sleep and rest for the rest of the afternoon/evening, but that wasn't to be. They thought she was in flutter, so doctors and nurses started scurrying around. Even doctors we have never seen before came hurriedly in our room. We were getting scared. One of them asked something to the effect of, "Why are we here?" That did it. I went into mom mode protecting her young, and said, "I don't know. Why ARE you here? You guys are scaring Bailey." We since learned that that was normal procedure around here when someone goes into flutter (or at least that's what they said to make us feel better). So I explained to Bailey that (except for these past few days in ICU) we have always been at home when she went into flutter, so this was something new to us. But fortunately, the end result of everyone coming running, was that Dr. Hubbard and Dr. Darragh also came running, and they got things under control. They discovered Bailey wasn't in flutter (and she kept telling them she wasn't or at least didn't feel like she was) but her heart rate was in the 130's (her norm is high 80's to 90's). Something definitely was going on, but not flutter. They think a combination of her being exhausted, drugs, and her anxiety just made her heart flip out for a little while. So I went downstairs to make a few phone calls while Scott stayed with Bailey (he stopped by after work), and came back up to find everyone in our room again. Her heart rate had jumped up to 170's and stayed there. Dr. Hubbard was able to hook her pacemaker up to a machine that enabled her to "pace" her back to a normal rate. Gee whiz. So Bailey went to sleep seemingly comfortably. I went downstairs to meet my sister Cindy and my brother-in-law David, who brought me dinner, and had a nice dinner in the cafeteria with them. Bailey wanted them to come say hi before they left, so we went up to the room, and, would you believe it, there were about 6 people gathered in her room and Scott was waving me down the hallway. He said, "They want to send her back down to ICU." He was quite upset, Bailey was quite upset, but we had good, good people there (Chrissy namely - she's absolutely wonderful and helped see us through the night with her first flutter in ICU last weekend) and it was so nice to have my sister with me. She speaks the medical language (cardiology even!) and was a great calming force for myself and for Bailey and for Scott, I think, too. Anyway, Chrissy explained that she really needed to be in nitric oxide and they don't do that anywhere but ICU, but she would try to make it happen anyway. She made it happen. She said she can't promise that we'll stay out of ICU, if Bailey's numbers don't do better on the nitric, but she got the machine up here and Bailey felt immediately better on it. I knew she was feeling better when she said, what is that over there that Aunt Vickie brought? Vickie delivered the package a few hours earlier just before this all happened, when Bailey was feeling just awful. Then, she went through the basket picking out the fruit she would keep and the fruit that the nurses could have. She ate an orange - the first food she's eaten today that she kept down. Our nurse also gave her a nausea medication that they use with cancer patients, and that (maybe in combo with the nitric) made a huge difference. She was sitting up in bed watching Dancing with the Stars. (We're shocked, by the way, that Sebrina went home.)

I am just so competely grateful for my family, for all the doctors and nurses and various other staff members who help us on a daily basis here. It is obvious that they love Bailey and will do anything in their power to make her feel as good as she possibly can. We are so so so grateful.

And, thank you R&L for also taking such good care of us. It is a tough, tough time right now, and you will ever, ever know how grateful I am for you guys and for everything you do for us. "Thank you" is not enough, but since it's all I can muster right now . . . Thank you from the bottom of my heart.

We are at home on the Heart Center and hope to stay here.

Have a good night, everyone. I am praying that we do the same.

Angie