She woke up this morning after a night of really low sats despite 1.5 liters of oxygen and a fitful, painful, upset sleep. She ripped those nasal cannulas right off and hasn't had to look back at all from a respiratory standpoint. Her pain was still a little rocky this morning, but we stopped her morphine and switched to a scheduled oral lortab to go with her scheduled IV toradol and that has been the magic pain combination to keep her happy. Looking back, I know we needed that morphine, but I think it also made her feel crummy in a lot of ways. She also had a pretty distended tummy this morning from gas. We did a glycerin suppository, but she still hasn't had a bowel movement, so we'll keep working on eating and drinking more to get things moving in that department. After a good morning nap and a little food to eat, we loaded Clara up for the first time in the wagon (or the "bear chair"). She was very resistant, but once we got going, she seemed to really enjoy herself. There's a nice rooftop playground and terrace on the 12th floor, so we went there and got a little fresh air and watched a few other kids play. Then we came back down, gave her a sponge bath and clean gown to go with her clean bedding and got her settled in for an afternoon nap. She rested very comfortably this afternoon, so I ran home to nurse Eloise and see her a short bit. She was still sleeping when I got back a little after 3:00 and woke again around 4:00. We did an x-ray to check and make sure that her tummy pain was just gas as we expected and her colon is very dilated, so hopefully that will continue working itself out and she'll get more and more comfortable. Her appetite was not quite as good this afternoon and we were a little late getting her the toradol and we could tell. She had some chill time in her bed, reading and watching movies and letting her Daddy make balloon animals for her. And once her meds were back in her system, we loaded her up again for wagon ride #2 (this time with Daddy). Back to the rooftop terrace and a little stroll around the hospital. We got back to the room about 7PM and she sat upright in a chair for the first time for a few minutes while I attempted to fix her hair. It's going to take a lot of conditioner to undo that mess in a few days! After some time dangling her feet in the chair and before she headed back to bed, she stood for the first time. It was only about 5 seconds and I think it was both a little painful and a little fearful, but she did it. I headed back home once more to get Eloise settled for the night and thought that Clara's work for the day was done, but when I got back to the hospital a little before 9, she said she was ready for another ride. This time she took a few steps from her bed to get into the bear chair and after our stroll walked about ten feet with only a little support to get back in her bed. I am, onc again, stunned. She has shown improvement nearly every hour of the day. There is still pain, we still have to get her eating and drinking better, we still would like to see some poop. But her spirit was back today and there is great hope in seeing how much progress she has made in the past day. Yesterday I hoped for brighter eyes, less pain, and stronger breathing. We got all of that and more today.
I have also felt today like I've gotten my "hospital legs" back a little more. It's hard to believe that it's been four years since this was our home and our routines revolved around shift changes and med schedules. There's a strange almost muscle memory to being back in this place again and while it felt kind of stiff and dream-like at first, today I felt like I was back in the rhythm again. It's like my car can autopilot through the parking deck, grabbing the ticket and zooming into my standard spot. My feet carry me mindlessly to the elevator and through the hallways. My eyes are naturally glancing at her numbers on the monitor and processing what they mean. My mind is thinking about her med schedule and setting mini-goals for parts of the day, balancing her pain needs, nutritional needs, and other concerns. All these habits were like second nature for so long... I'm so very thankful that I won't need these hospital legs for more than a few days this time, but it's a strange experience to feel myself settling into that role as parent, advocate, and caregiver all over again. We've had great staff taking care of us and it's been really wonderful to connect with some of our old hospital friends who have come and checked on us, too. No one ever wants their child to be in a hospital, and not a minute longer than necessary, but this place is special to us and we are grateful for it.
Tomorrow we hope to really get her eating and drinking a lot more. We can't pull that IV until she's consuming a lot more orally. We'll also try to help her spend some more time on her feet and building her physical strength and endurance. There's a great playroom on this floor that she's excited to try. She's passed gas today, so things are beginning to move, but a poop would be bonus for tomorrow. Folks have asked when we'll go home and there's really no way to know quite yet because we have to let her set the pace. But my guess right now would be maybe Monday.
Here are some pictures of Clara wow-ing us all today with her progress:
Morning Lion King Viewing (1 of 284 today):
Playing the giant music box with her toe:
Watching the lights on the 7th floor through the windows...
What I came back to after my afternoon Eloise break:
Balloon animals by Daddy. This bee was his masterpiece.
Resting in her bed (see her little poster behind her?... pictures and description of "healthy" Clara for all the staff who might wonder what she's like when she's not quite so pitiful.
Bear Chair #2:
Sitting upright, checking out her incisions...
First time standing. A few tears, but she did great.
Mermaid prize for her hard work today:
Clara found her legs and I found mine. I can kind of start to believe you all now when you say, "She'll just keep getting better and better." She sure is.
Thanks be to God.