Thurs Night - The eve of surgery

Sadie has had a busy day. The morning started out with the replacement of her arterial line in her neck. They had put it in yesterday evening, and had not sutured it, so it came out a bit. They had to come in and redo it - this time with 3 sutures to ensure it didn't come out during surgery. I was in here for the procedure, which probably wasn't smart on my part, but I haven't wanted to leave her all day. Right as the dr was finishing up, a nurse came in and said Katie was coughing in preschool and had to leave because it sounded bad (she's in the preschool here at the hospital for now - it's for patients and siblings 3-5). So I freaked out and got over there, just to find out they'd sent for the wrong parents - Katie was fine (thankfully - I was in tears thinking she was getting sick too).

I left Katie to play longer, and got back to Sadie's room to find out that an echocardiogram was next on the schedule. They were searching for her coronaries to make sure that they looked good for surgery tomorrow. The echo guy said he thought they looked good, but when quized further said he couldn't get a good picture of the left one. He left with a promise that I'd know more before end of day. It's officially midnight, and no word on that.

Meanwhile, we've been looking deeper into the situation regarding Sadie's kidneys and whether or not she should get the preventative dialysis tube. The surgeon says no, but several drs here disagree, as well as some nurses. I addressed it to their (the cardiology surgical team's) nurse practitioner who told me they'd made the decision not to do it. I don't feel good about it, and they promised I'd speak to the surgeon today, but haven't seen him. In fact, I've never met him. It makes me even more nervous. I know he's crazy busy, but I'm worried and no one seems to be addressing the fact that we, as parents, have the right to know the reasoning behind it all. The NP said that they talked to some renal specialists, and they concur... but I still want further reassurance.

By this point I had a killer headache/migraine type thing going and took Katie to McD's House for lunch/laundry/nap time. Don't even get me started on McD house - that place is terrible. Once this is over with, they'll be getting a piece of my mind. We want to go to a hotel, but haven't had time to really look into the best place to camp out for the coming weeks. Maybe tomorrow while we await news and have nothing better to occupy our time.

Katie's been a saint during all of this, and loves her little sister so much. She draws these adorable pictures of Sadie - gives her black hair that sticks up all over. :) Tonight I had to call Mom and Dad to get her, though, because I just don't want to leave the hospital.

Tomorrow AM first thing is surgery, and I'm nervous. I eat whenever food is put in front of me, but can't really get into it and would forget if not reminded. My stomache is a mess and I can't seem to focus on anything. I'm teary, but can't get a really good cry in. I'm - in general - a wreck. I can't wait for it to be overwith. At the same time, I dread the thought of what she'll go through tomorrow and in coming days. I wish I could take it away from her.

Sadie was much more alert than I've ever seen her since I've been here tonight. At one point she had to be suctioned again, and I was beside her, watching her cry, which tears me up. Then she reached out and grabbed my hand - hard! I couldn't believe it, and I'm taking it as a sign that things will be ok tomorrow. A short while later she opened her eyes and really looked at me (a who-the-heck-are-you, drugged daze, but whatever, I'll take it). It's those little things that keep me going, and give me faith that she'll be ok through all of this.

Please stop and take a minute (today, now) to think of Sadie and send some prayers/positive energy her way. We expect her to be in surgery from about 7am - 3pm. The first hour will be sedation, second hour will be hook up to the bypass (lung/heart machine) and third will begin the surgery. She will have the transposition reversed, coronaries reattached, ASD (atrium hole) plugged, VSD (ventrical hole) plugged and her ductus tied off, as it has not closed. So much stuff for one little girl, but she's tough and a fighter, and we know she'll be ok.