Jude's lungs and keeping him well

When I got home from work yesterday Jude was sitting in his wheelchair and was so happy. He looked pale but he gave me a huge smile! Charlotte told Mike that she had really worked on his lungs throughout the day with CPT and with his breathing treatments. Jude basically has his own built in respiratory therapists now and he has a consistent schedule of respiratory work. Charlotte said she believes with this type of around the clock lung care we can keep Jude well for a long time. She then mentioned both his lower lobes now sound great. That was awesome news. 

Jude stayed in his wheelchair for about another hour while I took a walk outside in the spring air. The walk was refreshing and made my mood so much better. When I got back Jude was getting a bit cranky so I moved him to his bed and he soon fell asleep. Charlotte said he slept from about 9am - 3pm yesterday and she believes his body was just trying to heal. So I chalked him going back to sleep up to him trying to continue to heal. When Moji (night nurse) got there she still gave him his breathing treatments and CPT  while he slept. However Jude was really working to breathe and had a lot of retracting. For those that do not understand what retracting is I made a video. If you think it will disturb you then don't watch. 

I asked the nurse to put his re-breather mask on and this seemed to remedy the problem. So I began thinking about what Charlotte said to Mike. Can we really keep Jude well and possibly stabilize him to keep him with us for an extended period? Of course I want Jude with us. Of course I want him well. Do I want him spending the rest of his life lying in bed or in his wheelchair working to breathe ......... no. I think Jude is happy just being around us. He is an innocent soul that only knows love and he doesn't ask or demand for much more other than being comfortable and healthy. However, is it fair to him to keep him in this condition? What's the alternative? There is none. We will do what needs to be done for Jude's health at home and keeping him well and comfortable. We hold him, love on him, and play with him as much as we can. We put Spongebob on for him........well nurse Allen does because I think I have watched every single episode multiple times. It's Judes favorite cartoon. We play music and we cuddle next to him in his bed. We don't take Jude out anymore because he cannot be away from his equipment but Jude seems content. Jude's appearance has changed to me and he looks more frail but again he doesn't get outside. So we take it day by day, minute by minute and if we are doing that for years or months Jude is happy and that's the priority.