I arrived at the hospital this morning and DH caught me up on the night’s events. Things hadn’t been too bad until one of the teams ordered an x-ray, and the tech who showed up to do it proceeded to shove the x-ray plate under Titanium Girl without letting her log roll on top of it or get a nurse for assistance. Needless to say, it was a very painful ordeal. DH raised a stink and eventually talked to the manager in radiology, but didn’t feel the concern was taken very seriously. I put that on my list of things to follow up on. Dr. C. had seen Titanium Girl briefly and was overall pleased with how she’s doing. He will not be in on Friday, but told DH he’d call later today.
I called radiology and left a message for a manager to call me back. She called back shortly afterward and told me I was on speaker phone with her and someone else who had done at least one other x-ray on Titanium Girl. I wasn’t entirely certain why this other person was part of the conversation since she wasn’t the x-ray tech in question, but I laid out my concerns and said that a child with two thoracotomies, two ribs removed, and a posterior fusion with rods,should NEVER have an x-ray plate shoved unceremoniously under her back without getting assistance and letting her roll appropriately. I suggested the tech needs training and relayed that DH had earlier complained without feeling the complaint was taken seriously. She emphatically assured me the complaint was being addressed and was absolutely taken seriously. Not sure what else I could do or say at that point, I left it at that.
Titanium Girl had a fairly good morning. We had a visit from Pastor M. that put a smile on her face. I’d been given the go ahead for her to be able to suck on hard candy or chew gum, and while Pastor M. was there, I took a moment to run down to the gift shop for some gum since the spearmint I had wasn’t Titanium Girl’s favorite flavor. PT. J. came and we got Titanium Girl walking–albeit still supported–down the entire hall and back, which is quite a distance when you’ve been through everything she’s been through in the past week. She took a brief break at the end of the hall, sitting in a wheelchair for a few. Unfortunately, she sat down a bit hard, and her back started hurting her some. But she made it back to the room, seemingly walking faster back. The effort again took its toll, and once back in bed, sleep came on pretty quickly. She knew we were expecting another visitor, though, and as she started to drift off, she made me promise to wake her up before Miss A. left if she came while she was sleeping.
A. brought me lunch, and we chatted a good long while, which was a welcome break. Then Titanium Girl got a nice surprise when some volunteers brought by a therapy dog nearly as big as a horse. She was a great dane, and very very sweet. It was a double bonus for her to wake up to Miss A. and the therapy dog.
Titanium Girl’s pain pump was discontinued today, and she did well until around 3:30 when her back was really getting painful. I don’t know if it was the shift in medications (her oral pain med was also changed), or the rough sit down from the morning (or a combination?), but as PT J. came back for her afternoon physical therapy, she was in tears and saying she couldn’t do PT. Her pain level was a 10.5. She’d taken a pain pill, but it hadn’t kicked in yet. She could have some valium, but the nurse was afraid it might make it harder for her to do PT. PT J. suggested she go ahead and have it since she was clearly in so much pain. We practiced her focus and breathing, and she felt like the valium took the edge off. I encouraged her to do our planned longer walk, but she clearly wasn’t up to it with the pain. She offered to walk a shorter distance outside the room, then wanted to go back to bed. PT J. thought it was a fair compromise given how she was feeling.
At some point in there, I realized the room phone had been knocked off the hook; I’m sure if Dr. C. tried to call it would have been during that time, as I never did hear from him, and he’s been extremely good about follow up otherwise. I mentioned to Nurse K. that we may need to check in at the beginning of the shift with Night Nurse K. regarding pain control overnight, as I was concerned with how things were shaping up. She slept for awhile, but woke up in pain. We practiced lots of focusing and relaxation, and she’d managed for awhile. DH’s parents arrived to visit shortly before DH and Boy Child did, but unfortunately, there wasn’t much visiting with her in so much pain. DH brought a gift my college friend TG sent Titanium Girl–a Ms. Marvel graphic novel. She sent a Tiny Titans graphic novel for Boy Child as well. Titanium Girl appreciated her book, though wasn’t able to spend a lot of time yet reading it with her pain. Boy Child was literally laughing out loud at his; can’t wait for Titanium Girl to get the same enjoyment out of hers. DH and I talked about pain management and strategies for overnight. I left him with some things to follow up on with docs making the rounds in the early morning.
At this point we’re looking at possibly discharging Saturday, but I’m having a hard time believing she’ll truly be ready even then. She hasn’t eaten in 10 days because of what the medications have done to her system, and she is not currently allowed to eat. She’s hungry–starving really–and that’s not helping her mood and possibly impacting her pain tolerance. I’m not sure if she’s supposed to be able to walk unsupported, though I would think that’s the game plan. However, she still very much needs support and assistance when walking, and I don’t think the lack of food is helping that. So while there’s still progress being made, we’re also somewhat stymied. It’s more than a little frustrating, and I just hope she has an ok night tonight…
