You can't replace the original recipe! Everyone has been so kind to research and send meditation techniques to help KT deal with the pain, so I decided to try a few of them. For example, Ali's links had a "floating on a cloud" script that I tried on her night before last. No go! As soon as I started it, she vigorously signed, "No!" and started flapping her arms to indicate she wanted to "fly," Aunt Rachie's way! So, I had to go back to Rachael's script to get airborne, and then I smoothly transitioned to the cloud script - it blended pretty well, but there was no way I was going to get away without starting out with the box of pain being left on the ground as we floated away in a hot air balloon and watched it get smaller.
Dr. Gordon came in this morning to ask if we wanted to go through with the procedure he came up with to remove the top pins and replace them with solid plates in her skull to possibly reduce her pain. I asked if he'd ever done this before, and he said no. Pam and I had been discussing the option just a few minutes before, but at that moment, I got the impression to say no - let's take her home for the weekend and see if being outside the hospital on the same pain regimen will help her focus on other things and get through this. I was afraid we might be just trading one problem for another. So she's being discharged this afternoon, still in a lot of pain, and unsure she even wants to leave the hospital - there is definitely fear involved here.
Shortly after, another family who just went through this type of distraction came to talk to us. Their daughter, Carrie, is 18, and is under the knife right now getting cheekbones and eye orbitals after having just distracted. They were VERY helpful! They had the same issues as we're having, but have felt it was all very worthwhile. They showed us how much growth they got out of it. The nurse practitioner also showed me the x-ray they took Monday, after only 5 days of distraction, that clearly showed her airway opening up already! So all that was encouraging, and we feel good about this decision to bring her home and see how things go.
Rachael Wheeler, KT's cousin, is coming her from Columbus today or tomorrow with her 4 kids, so we'll go to the zoo that is just a few blocks away. That should be a good distraction, as KT loves little children AND animals! We'll let you know how it goes.