Tough Girl: Day One.

Daily notes: these are notes I've been taking on my phone all day and I can quickly update this blog. I want to keep you all informed, but this one might be a little brief and fragmented. We are pretty tired tonight.

Wednesday may 18

• Got IV and midazolam and was pretty good, to get her sleepy and happy in the day care room
• We were able to leave at 8:20.
• Went for breakfast pancakes
• Then to starbucks and then mec then to oakridge. Looked at watches.
• Back for 11:30. Realized we forgot our lunch. Dang.
• Waiting in ICU waiting room.
• Saw surgeon at 12:30. All good. Bit of a late start.
• Lots of muscle build up again, cut it all away and put a patch under it.
• Sealed up the 5mm hole between her atria, because she doesn't need that pressure release any more. She was a true double outlet right ventricle. They did use bovine pericardium for her patch. Yes, that's cow parts!
• Gradient was around 15 not 80 any more. Low enough down they aren't concerned.
• We'll see if her muscle building button is turned off or not: see if her body just wants to continue to keep making those same bundles... hopefully not.
• Off breathing tube in the OR, no need for blood.
• Saw piper around 2:30 and she was already moving around a little upset. They don't like her BP that high, around 130/70, so we need to keep her calm.
• She is cranky because her sedation is wearing off and she is uncomfy.
• Added some calming drugs/Adavan and doing better.
• Saying "all done" and asking for milk.
• Eyes open sometimes but mostly sleepy
• Music therapist came and sang some songs. Very sweet. Twinkle, twinkle little Piper.
• IV in both hands and foot. No central line in neck, arterial line in her arm that soon came out... oups!
• Lots of advances since December with a new surgeon, and lots of new procedures and making lots of progress.
• Doctor mentioned the possibilty of having to go through this again... always a possibility.
• Doctor said that toddlers do so well recovering, even more than babies.
• Feels really busy in here.
• Up every 10-30 mins with a fight.
• Piper works best with midazolam not so much the Presidex (the dex word). The nurses said that Piper is old school that way ;)
• She is trying to crawl out of bed. Got to really work to keep her settled. Tiring.
• Snuggled me for a little bit. So nice.
• Lost her arterial line needs a cuff, which is annoying as it pumps up every 15 minutes. Almost guaranteed to upset her.
• Downed some juice, asking for milk and trying to sign it. So sweet.
• She is quite warm. Back in bed a little better, not so hot.
• Gave her some chloral to help her get some real sleep to tonight, didn't really end up changing much. They ended up just upping her morphine for night time... not convinced she'll really sleep.
• Still likes her soother. A lot.
• Draining a lot out of her chest tube. Very cool, new system. Drainage is good, but there is a lot of it.

Otherwise, a pretty good day. Just long and tiring. We are really glad for all the great people in that hospital, but we are weary for the process ahead. If we end up going upstairs to recover tomorrow, we will be a little more on our own, so we'll have to do more of the hard work.

We are hoping that soon more lines will come out, and Piper will be a little more free and a little more comfy. We'll see how tomorrow :)

Thanks again for all your prayers and support today. We've really appreciated it all. Wow. I still can't really believe we're doing this all over again.

Tomorrow we hope to take out some lines like her catheter, one IV line, chest tubes, pacer wires and maybe something else. Then maybe she'll go upstairs and start eating a little more and being a little more normal. One day at a time!

Now we just need to rest so that we can work hard tomorrow. I'm feeling really tired, but I kinda just want to get back there and see how she's doing :) She might get some milk tonight, which will make her happy and miserable at the same time. Can't win.

Goodnight all!