If you've been following me for a while, you have heard me talk about the "Hurry Up and Wait" method that hospitals love to use to torture families. You know, the whole idea where the doctors make something seem so urgent that it needs to be taken care of right away...and then...you wait.
Case in point: Abby's back looks really different now. There's a piece of the rod sticking up that is very visible under the skin. She had a bad fall on Thursday, so I decided to contact CHOP to let them know that things weren't looking right and that she had increased pain. After sending pictures of Abby's back on Tuesday, the nurse practitioner urged me to go get xrays right away. By the time I talked to her, it was too late to go to Hopkins that day because xray would have been closed. I took Abby there on Wednesday, got the disc, and contacted CHOP right away to let them know that the xrays were up in the system.
Meanwhile, yesterday evening I shared xray images with others on the VEPTR site, and many felt like it looked like a rod had dislodged. So...we prepared ourselves for surgery very soon.
This morning, I hadn't heard anything back. I texted at 10 and was told that she couldn't view the images on their system. I figured out how to email them (a bit of the challenge using the xray viewing system), then heard nothing. I texted again to check in, asking if we needed to change our vacation plans. She wrote back saying that was crazy, that there was no way we should do that. I asked what Dr. C. thought about the xrays and explained that it looked like a rod was displaced...no answer....nothing.
Frustrating day, to say the least.
A positive is that Abby's pain is under control with OTC meds and she seems to be ok as long as she is sitting. And, our vacation is still on! So, we'll be thankful for those things and hope to find out something tomorrow!