Impressive Girl! Day Three.

Daily notes

Friday May 20

Day started off with rounds. We had just gotten up 2 minutes earlier, just enough time to roll out of bed and look semi-presentable.

Rounds were good. Talked about taking out chest tube and pacer wires and get her moving. Thinking to send her home tomorrow.

Had a nice, normal awake time with lots of bubbles and even ate a bit of applesauce. Tried yogurt, but too interested. She isn't too interested in food, just the occasional drink. I think that will get better once we're home and doing normal home things.

Around 10 am, she had a cool ECG that said that her heart was ready to be unplugged from the pacer wires. Usually when they those out, they take out the chest tube, too. And it also means that she is almost done with her IV, as she was just getting antibiotics to keep infection away from her chest tube. So they'll lock her IV off, but keep it in. She doesn't seem to mind it too much, as she does have one hand totally free.

Then to take her pacer wires out! Always kinda interesting to see wires just keep coming out of your child, with a lady tugging on the other end. When the doctor first pulled on them, Piper reached up to her heart, as if she felt where it was being pulled from. Very interesting. They almost had to leave one in as it really didn't wanna come out! But alas it came out. Hooray :)

Then the chest tube, which always surprises us to see how much tubing was actually in there. Out it came, with a bit of fuss, but it came out all right. Still, kinda gross. Matt had to sit down for a bit while I held up the iPad so Piper could keep watching the show that was keeping her pleasantly distracted. Soon after that, we needed to switch spots as I needed a seat. The process just seems uncomfortable, and I'm sure I'd be squirming or worse if it was happening to me.

Now she has a new dressing that we will keep changing for the next 10 days to keep it clean and dry.

Then we all took a really good nap. So badly needed.

She woke up a little growly but ok. There is constantly someone checking her out for something so she's allowed to be a little upset.

We had lunch and then off to her echo downstairs. She did amazingly well and needed no sedation. And now that we've talked to all the cardio team, they say it was perfect and exactly what they expected. Hooray! Again, all of this news sounds like they still want to send us home tomorrow :)

She seemed to be a little backed up still and hadn't pooped since yesterday, so that is why she was a little cranky. We made sure to get her moving and sure enough, out it came. She was a new person!! We went to the toy room and she played with all her favorite things. It was nice to see a little bit of the girl I'm used to :) Of course she was tired out before she normally would be, but otherwise, did really well.

Piper still isn't eating much, but drinking milk and juice happily.

Had another good nap and woke up happy but pretty cuddly. Not too brave.

Went for a chest X-ray. It was so fast!

Tried bringing her to the play room again, but this time she wasn't too interested. She only wanted to cuddle Matt. Then we went out to the patio to get fresh air, but she didn't like that much either.

Matt's sister and hubby stopped by with dinner and we ate outside. Piper was pretty shy and quiet and still didn't eat anything. But once we brought her back to her bed and she got a new diaper, she was a new baby. She was chatting and asking for juice and stickers and telling us all sorts of things. Her words are pretty slurred but we can get the important ones: soother, juice, milk, no, show.

It's been a slow but easy day. We've all rested a little and feeling like we are definitely going home tomorrow. We could almost go right now, but they just want to monitor her one more night and then send her off knowing she's doing just fine.

We'll most likely come back on Tuesday for a check up and take a look at her incision and to remove two little stitches above her chest tube hole.

Took a nice break in bed and then we went to play in the toy room for a bit. Again, after a good play, she had a good poop! Victory!

Once we had walked back to our room with a popsicle, she played for a bit standing up and then started gently touching her chest. Matt asked her if it hurt and she said "yeah". And then he asked if she wanted to lay down and she said "yeah" to that too and started heading over to her bed. Once she was all tucked into her bed, she was nice and quiet and happy.

All in all, its been a pretty easy day. I've found recovery to be way easier than the ICU time this time around. That was very much the opposite from last time. Tomorrow should be a pretty slow day, too. We'll probably spend a lot of the day waiting to see doctors etc and then to get some extra teaching from our nurse. We will get taught how to change her dressing, which we'll have to do every day for 10 days once we're home. I just have a feeling that all of that will take a while. I'm not expecting to be home until after lunch. Just a wild guess.

But today was good! Lots of progress in the right direction. And we're almost home and able to get back to normal!!