Update: Day 2

Wow, a lot has transpired over the past 24 hours. A day ago, Maddie was coming out of the OR and we were getting ready to see her. Today...get ready...she's been moved to the floor. Yes, I know. We're shocked too. Happy but we were not ready for this. But today has not been an easy day by any means. She's miserable--she has cried, fussed, coughed, wrenched in pain and begged for help. It's sad to watch and been a real balancing act on her pain meds. But she reached the criteria for moving out of the CICU by noon today and they needed the bedspace. The transfer process took about 2 hours.

So I'll back up, yesterday evening went pretty smooth. My mom stayed with her while Bryan and I went to dinner and she actually smiled once when we were gone. The smile came when my mom and our great nurse, Sherry told her that her heart was fixed. Bryan pulled the night shift last night from midnight-6am. I had a great nights sleep, which now I admit, I needed. He hung out with us a bit this morning, then went back to sleep at the RMH around 10. During the night, she did fine. Slept off and on like she had all day (hour asleep then slight wake-up and doze back off.) He said she did get pretty worked up when they came to do her chest x-ray though. The nurse we had, Jess, taught her a deep breathing technique since her sats really dip when she's upset (into the 60's) and she has been using her "closed mouth, into the nose breathing" technique since. She's a smart little thing and responding well to our requests. She's hated her nasal cannula but still needs it. She's on 3 liters of O2 and satting mid 80's on this. Right now, she's finally sleeping and her sats are actually 91 right now! Have never seen this and brings me to tears, even though she's on high flow oxygen.

Late morning she had her IJ line removed from her neck, her ART line in her left hand (yay, she can suck her thumb now), pacer wires removed, and her foley catheter (for urine) removed. The first three of the "de-lining" procedures took suture removal and luckily she was loopy enough but it still was very uncomfortable and her anxiety level was definitely increased. Lots of tears, holding of breath, monitors beeping and she was just pissed off. It's hard for her to understand "why" these things have to be done. Luckily, we had our favorite CICU nurse, Anne, who took care of Maddie her first week of life here at Children's. It's so nice having this continuity of care. We love Anne. But she's had a few tough moments besides this- chocked on her milk/pediasure this morning and now she's leary of drinking again. She did eat a whole popsicle, a couple of bites of pudding and 4 bites of mac & cheese for lunch. We haven't gotten her up yet but they'd like her to do that soon, so maybe tonight we'll get to hold her. She did rip off her nasal cannula (which she's hating) and it caused a pretty icky bloody nose and lots of coughing. RT added a bit of humidifying O's to her as well. After my idea of changing it to a smaller cannula, she's been more content with it and without that oxygen, her sats stink. We're hoping with healing, they will keep coming up and we can start the wean off the oxygen. She's draining a moderate amount from her 3 chest tubes, 483 cc as of 6am this morning. Currently she's sleeping peacefully and even sucks her thumb now and then. It's good that she's resting and I think I'll do the same. Thanks for the prayers, they're WORKING and please keep them coming. God is so GREAT!!!