Jude's Monday update

Everyone has been wondering how Jude has been since he has been home from the hospital. I am generally at a loss for words and unsure how I should respond. I really didn't have it in me to post an update this weekend. There are some hours that Jude looks very good and more like himself. Then there are bad hours that Jude is really struggling with his chronic lung disease. He coughs until he is red in the face and his lungs crackle with fluid. We consistently suction him to pull the fluid out and we re position him on a regular basis. He had a hard time yesterday evening while I had friends over visiting him. Eventually I gave him some of the new concentrated Morphine and I was relieved that it helped him. His respiratory finally relaxed and Jude finally settled down. 

Our weekend wasn't easy. Mike and I talked about subjects that no parent should ever have to discuss about their child. I want to point out that we in NO way expect Jude to leave us any time soon. We hope that he is with us for years to come. However, our situation is to a point that we had to make plans and those plans were difficult to discuss. I am grateful that I have an amazing husband by my side and that we can support each other. 

Jude's wonderful nurse Charlotte is back and she is loving on him today. I checked in with her and she said that Jude is just "a sick little boy". She then said he is very pale but that she was able to give him a shower without his oxygen dropping. We then talked about what the hospital told me regarding the machines which she was already aware of. That what's happening on the inside of our bodies may not show on the monitors... just like the blood gas emergency. Then suddenly a prior conversation I had with the doctor where I thought he was being rather rude surfaced in my mind. He told me that one day there may come a time that I don't care so much about Jude's monitors. He wasn't being rude he was just more medically educated than I was and he knew fully how the body works. 

Melinda the hospice nurse comes to see Jude almost daily and yesterday she sent a sweet message. She said Jude was laughing while getting a bed bath and listening to Sponge bob. 
So Jude listens to his cartoons each day, Allen reads him the Bible, Charlotte loves on him, and we talk to him every chance we can. Jude looks frail and tired but he is here with us and is our little fighter. There are some video's I could post to give people a better idea of just how sick Jude is but I chose to keep those private. I would rather people see Jude smiling and happy. #onlyloveJude