DH and Boy Child brought me dinner last night, and knowing Titanium Girl could not yet eat solid food, I took it downstairs to eat so as not to eat in front of her. The timing worked out well, because we were expecting visitors from our Girl Scout troop, and I was able to meet them downstairs after I ate and bring them back with me to the room. M. and her daughter S. brought wonderful gifts from the troop, including a huge pile of books (each girl had donated one of her own books for Titanium Girl to read), a crafty project to make stress squeeze balls with balloons and play-doh, and a gorgeous blanket that all the girls in the troop had made together. Titanium Girl was holding up well, and the girls were able to visit together while we grown ups did the same. Dr. C. called to check in on Titanium Girl, and I gave him the progress report. He was pleased at the direction she’s heading.
After our friends left, we had a surprise visit from friend T. who happened to be visiting other family at the hospital and was kind enough to stop by for a bit. Afterward we spent some time together as a family, DH and Boy Child left for home, and I settled in for the night with Titanium Girl. Our initial Nurse R. for the night was transferred to another unit a few hours into the shift, and Nurse L. took over. Titanium Girl had some problems getting comfortable throughout the night, and Nurse L. said this happens with some regularity at night for these kids. She also suggested that Titanium Girl should try to stay in one position for 10 minutes or so to settle into it, even if it’s not completely comfortable at first, because the back and forth movement can lead to more discomfort. She helped Titanium Girl reposition with some pillows, and Titanium Girl found that Nurse L. was right that she would be more comfortable if she stayed put for a bit.
She did have a rough patch, though, and Nurse L. suggested adding one of the previously used pain pills on top of the one she was on. I asked to be certain the two meds could be combined, and after a discussion with the pharmacist, she reported they could be. After giving it to Titanium Girl, the night went better, but I did wonder in the back of my mind if the extra med would create more GI issues for her.
Around 8:30 in the morning, Dr. M., a Fellow with our spine surgeon’s practice, stopped by to check in on Titanium Girl. I spoke with him about the GI progress we’ve seen, the need for the second pain med over night (and that it worked well), need for a valium pill vs liquid, and eventual at-home pain management plans. Dr. C. himself called an hour or so later. After he laughingly asked me if I ever go home, I promised him I have and do, but that last night Titanium Girl just wanted her mom. We talked over the conversation with Dr. M. and the improved pain management and GI issues. He thinks she may be ready to discharge Sunday, but she’ll need to do plenty of walking and sitting up today. He asked if I thought she looked straighter or if I could tell yet. I told him sometimes she stands up extra straight and I can tell she’s taller, but then those weakened muscles lose their stamina and she hunches over a bit again. I reported her shoulders do look more level, the lower hump is gone, and the shoulder blade prominence is definitely much improved. PT J. had told me that soft tissue sometimes takes 6-8 weeks to get used to their new places and strengthen adequately to hold, and Dr. C. confirmed this to be accurate.
Titanium Girl took a bit of a nap and woke up grumpy and a bit behind the pain curve. Weekend PT came, a different J. than we’d seen through the week. Titanium Girl did not like her as well, and she didn’t particularly feel like doing PT at that point. But we reminded her she still had lots of work to do today and that Dr. C. wanted her up and at ’em. Today was also the day planned for walking up and down some steps. Weekend PT J. asked how many steps we had up to our house, and we told her 5 from garage to mud room, so her goal for PT was to walk up and down 5 steps. She handled the steps well, though I was actually a bit nervous watching her and not being right next to her. She then had to walk the entire circle around the unit, which she wanted to speed walk until Weekend PT J. told her to slow down. After we got back to the room, Weekend PT J. had her do some exercises of her arms and legs, encouraged her to continue these at home, and pronounced her graduated from PT. Needless to say, naptime ensued after all this work.
In the afternoon Titanium Girl’s friend K. visited with her mom S., and she brought a new and improved ™ Simon game (why do they need to “improve” all these things from my youth??) and some slipper socks. The girls chatted while S. and I talked, and Titanium Girl was holding up really well. Another friend of Titanium Girl’s was planning to visit later in the afternoon, and Titanium Girl promised to walk more after that visit. We spoke with Day Nurse L. about Titanium Girl’s diet, and she got permission from Dr. M. the Spine Fellow to advance from clear liquids. Day Nurse L. offered some graham crackers, and Titanium Girl gratefully and dutifully began nibbling on one. Friend G. and her mom M. came, bearing more gifts; it’s more than a little humbling all the gifts and kind gestures so many people have done for Titanium Girl and our family. G. and M. got to see her move from her chair to bed, and the girls visited together while M. and I caught up. I was glad to see Titanium Girl so much herself throughout the afternoon.
True to her word, after G. and M. left, Titanium Girl took another walk around the unit, adding an extra bit at the end so that she walked a farther distance than this morning. She rested for awhile, then DH and Boy Child came back to the hospital. DH and I talked about pain management options with Day Nurse L. and one of the nurse managers. We all desperately want Titanium Girl to go home, but we also know her GI issues aren’t fully resolved, and she’s only just begun eating bland foods. The last thing we want is to go home then have to go back. DH and I decided I would come back to the hospital early in the morning so that we can both be part of any conversation about discharge. My Cousin S. thankfully agreed to come to the house to cover Boy Child so I can do that with one less distraction. With that plan in place, Boy Child and I exited stage left for the night…
