Steady now

I will start with- Sadie's heart numbers look good. Her EKGs and Echos have looked good. Her medication levels have evened out and she's almost completely off a couple of them. 
But. Her kidney function isn't trending great. It's not to a concerning point of intervention, but it's also not in a "good" range- it's currently the kid in the back of the class with headphones on: present, participating, but not exactly engaging and difficult to tell if they're absorbing anything.

The goal this week is to drink a lot of fluids. It's time to get serious about electrolytes. Her body flushes them out at a rapid rate which can also mess with her lab numbers. She's currently stable, but we're doing the work to get her to 'looking good kid'. Her kidney numbers will be rechecked on Monday and we can get a better idea of how they're doing.

Speaking of lab numbers- clinic was a little rough this week but Sadie found her person. The amazing lab tech in the transplant clinic. She knows how to speak Sadie, she pushes when she needs to push and she helps Sadie breath when she needs to breath. It's still a rough process and Sadie's still struggling with it, but it's getting better. I do have faith that every visit will get slightly easier.

I'm really proud of Sadie and her active roll this week. She's on a dozen different medications- before we left the hospital her transplant team made sure we had a weekly pill organizer. So far I've been handling all of her medication and Sadie's roll was to tell me if there was too much applesauce on the spoon for each swallow. Last night I asked her if she wanted to help me sort her medication for the week and she got very excited. We sat down and pulled up her written list and laid out all her medication bottles and she counted them out, put them in the proper spots and started to learn their names and what they're for. She's also grown accustomed to letting me take her vital signs and not getting frustrated with the cuff or the pulse ox as often. I think the hospital left her a little over sensitive to touch and every little thing made her nervous, we're starting to even out a bit on that.

The thing that I'm most excited to tell you about is today. Today we spent the entire day moving, I asked if she needed a break at least a dozen times and she'd keep saying "Nah-I'm good"- and there was no nausea, no extreme fatigue, no lack of appetite- just Sadie being Sadie. She's currently on a video chat with her sister while they both have dinner and watch the storms out the windows together and listen to Toy Story playing at the same time. It's the closest we can get to home at the moment but it does my heart and soul so much good to see it. I'm not entirely sure of the timeline left in clinic, but it will most likely still be another two weeks and then we'll see- we will go where we are lead.

Steady we go up this mountain.