Bailynn’s back looks ever-so-slightly better. The swelling has reduced a very small amount and the bright red inflamed color has diminished a bit as well. She is pretty well stuck in her bed watching movies and rattling toys until we can resolve this issue. We gave her a very gentle shower last night and took more photos of her back to continually document the progress. We fear that it does look like puss. I keep telling myself that it is not. I keep convincing myself that it is from exposure to air. It could be that it is gooey due to the gauze collecting it all into one location. Come to my delusion with me. I will send new pics to all the doctors in the morning with a shot of the gauze we removed as well, so they can get a look at the drainage. She still is not running a fever, she is eating, and she over-all seems to be in a pleasant mood. How!? I’m unsure. This child’s threshold to pain should be documented (along with her ability to eat 2-3K calories a day and barely gain any weight).
So, this is our plan. Ok, it could completely backfire in a blink and we know, but it is our plan. We will wait out the completion of the antibiotics (that for your information absolutely taste like what I would like to compare to Dinosaur bottom). Upon completion of the antibiotics if the swelling returns like before, we will know it is in fact an infection and we will have no choice but to allow them to remove the rods. If it goes away, we are in the clear. If until then the metal comes to view, GAME OVER. Like all those “ifs”? I don’t. So if if if if if, and we shall see. If she does have to have the rods removed, this is the issues. Bailynn has had the rods in place now for 7 years. They have grown with her bone and her body for 7 years. Therefor, they are fussed into the very structure of her spine. To what extent, her orthopedic surgeon can not be sure until he would open her up and see. He can be sure that to remove them will require intensive chiseling from her spine bone. Chiseling. Freak out with me HERE!!!!!!!!! This could, could, create permanent damage to her spine (fyi she already has mild-moderate spinal damage). This is incredibly dangerous and will take much longer to accomplish than simply placing the rods. She would be in surgery for many hours (been there, done that). WE DON’T WANT THIS!!! So, the ifs continue and we wait it out. We always seem to be waiting it out.
She can’t take any of her medication that helps her kidneys or Tuberous Sclerosis while this is going on. Pray that her kidneys do not hop on the tuber growing speedway during this opportune moment. Her kidneys need to do their job! One crisis at a time please.
So there is the update for now. I should know something else tomorrow once I submit new photos to her physicians. Pray for a good outcome – remember you joined me in my delusion in paragraph one! You can’t leave! 😉