Today, while the girls were both at school, Wyatt and I had a quiet day playing and talking. We talked about how he's feeling, what's uncomfortable and what's feeling better. He was sitting in his wheelchair for a bit this afternoon playing a Disney Cars game on the Wii, an activity that he used to love prior to September/October, and today asked to play again for the first time. We've seemed to have gained a degree of pain control since this last stay in the hospital, his pain rating as low as a 6 out of 10 at times. I'm not certain what has attributed to this change, but think it's most likely coming from the increased dosage and frequency of the Methadone, a drug that we know works best for him, along with the comfort that the supra pubic catheter gives him. His Dilaudid PCA dosing has now returned to the settings prior to surgery. I do realize most wouldn't celebrate a pain level such as this, but for us and "our normal," it's an exciting step. We've not seen a "6" since October and we've not seen lower than a 10 (out of 10) for quite some time. It's progress...wonderful, great and very much needed! A break from the intensity of his pain has brought healing, motivation and, in a sense, freedom.
Wyatt and I talked of aspirations recently, what he would like to do again. He misses walking the most, understandably. The ability to move his body from point A to B without the power of his wheelchair, something that many of us take for granted. And something that he has no desire or enough energy to even think about when his body is hurting badly.
Today he allowed me to help sit him on the edge of his hospital bed, his legs dangling over the side and me supporting his body, as we've done many times before. Using all his might just to hold his head upright as much as he can. He then put his feet on the ground, something that hasn't happened recently. After giving him a little encouragement, I stood in front of him, holding his body up in somewhat of a standing position. He smiled a smile that lit up his face with great pride.
He's been tolerating time off the bipap machine the last few days, using 3-4 liters of O2 via nasal cannula for up to a total of 2-3 hours a day. It exhausts him, his heart rate rising with the increased work and stress put on his body to take breaths on it's own, but he can do it for a short while again. It's so nice to see that beautiful face wearing only a cannula for a little each day!
But above all else, what little pain control we've found has brought back my boys smile. I love watching him smile!