Our nurse left the bathroom lights on so SHE could see. Seriously, what about the patient who is trying to sleep at night? Ainsley kept repeatedly waking me by raising her arm for me throughout the night. Just when I drifted off to sleep the compressor of the bed (it's filled with air) would start up and through the air plugs it sounded like a vacuum or air blower. This happens about every 20 minutes. The next day the nurse told me she had been removing her CPAP mask (which the hospital had placed on her by a respiratory therapist) to swab her mouth which made me very angry. With all this no wonder she wasn't falling asleep. Finally around 4:00am I let the nurse know she needed to turn that light off.
About then Ainsley finally settled (trying to sleep in a lit room in weird surrounding after a big surgery while a nurse is touching you every few minutes makes is hard) and I was finally able to sleep just to be awoken at 6:00am by the charge nurse right in my face saying they needed to move our room. I had to pack up the whole room. Right then. I was angry to say the least. The night after such a major surgery we need our rest to recover! Those who know me know I'm not a morning person. Catch me off guard deep in some much needed sleep and I'm not very nice.
Then started the unending activity that happens at the hospital: shift change, the resident Ortho came in, the ICU attending, there was rounds (that interestingly had about 12 people, two were signing in sign language), we met with the orthopedic surgeon, then orthotics came by to do dressing changes, the charge nurse came to check in on us, the pain doc came to check her epidural, we had a visit from the social worker, the equipment guy showed up with the wheel chair, then the Ortho nurses who discovered she hadn't been repositioned as she should be, every 2 hours, the other Otho doc came by to see if we wanted to be moved to the floor (which we do). Ainsley had a pain surge and we had to change her med schedule. Finally someone suggested we put out a do not disturb sign and we took a little nap. Of course during that time her PT Connie came by to see her. The one person (besides her surgeon) we would actually have wanted to see. Figures!
Ainsley has made a little progress drinking some apple juice and water. About 4:30 we ordered her a late lunch (she kept saying no) earlier. Food usually helps her start to feel better..
She keeps saying "all done" and pointing at her legs. She also keeps holding up 3 fingers as a way of asking when are we going home. Three days minimum, she knew. It's going to be another long couple of hard days. But I promised her I hate being here as much as she does and will get her home as soon as we can. The next 6 weeks of no weight bearing (bed rest) are going to be difficult. I think she will be much happier at home after the Foley catheter and IV come out.
The good thing is that the surgeon said that the hamstring lengthening is pretty instant. Although things will continue to improve with therapy she should be able to sit up better because she isn't as tight. Right now she is on sciatic nerve precautions so I'm a bit nervous about moving her too much with that catheter. I did get her a bit more upright for her meal and she's better able to watch a movie which I think will take her mind off things.
As I said in my last post the feet will take more time. When the swelling goes down they will tighten down the casts which were split to accommodate the swelling. Then they will wrap the casts again. Although I'm optimistic about getting out of here it may depend on how quickly they can fix the casts to protect her feet. I'm not sure how often I'll update, but no news is good news.
Yesterday I forgot to say we are in the new wing at Seattle Children's. It's HUGE.
It's a beautiful place. The coolest thing is the elevator (this is the elevator art). The doors have sensors that adjust instantly to obstruction and will not touch you. For someone handicapped this is HUGE! I can't tell you how many times the elevator door closes on us too soon. I hope someday all elevators will be like this.
I'm still having a ton of trouble with my iPad keyboard in blogger. It bounces up and down and you have to enter return to get back to your spot and then delete the returns afterword. It is exhausting after exhausting days. So if you notice uncharacteristic typos it's because of this. I've come back to "clean things up" and used a desktop computer to enlarge the images like I usually do.
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