Jude had a hard day today while I was gone. I can tell he is getting sick again and Charlotte mentioned she noticed a change in his behavior on Friday. Luckily he isn't running a significant fever yet, but we are closely watching him. He had Morphine twice today, benadryl, and more to help him breathe and help him relax.
When I got home he smelled sweet from his bath that Charlotte gave him and he was snuggled into his pillow fast asleep. Charlotte explained he had several gasping episodes and she had to use the re breather or reposition him throughout the day. I walked away from his bed and looked from the kitchen into my living and thought "he is having a good day now". Then I stopped myself and realized..........no he isn't. Let's be honest.......no he isn't. I am not being sad, or angry, or anything other than 100% completely honest.......Jude is NOT having a good day, month, or year. His life mostly consists of being in a hospital bed in our living room now with his oxygen machine running and a suction machine frequently attached to his lips. He cannot stay in his wheelchair or bath chair for hours like he used to. For a few seconds I felt sorry for Jude that he was having to live like this, but I know he is just happy with the love showered upon him. Jude knows only love and that makes these days more bearable. His little lungs work SO hard that Jude is frequently drenched in sweat. We thought he was just hot or had a fever, but Charlotte made the point today that it's probably just from working so hard and it made perfect sense. If we run a marathon we are drenched in sweat and Jude's little lungs run a marathon everyday. Yet Jude wakes up on his face and the constant fight seems to have little effect on his demeanor.
We are hoping the night nurse can make it today so he will have someone watching him throughout the night. We missed our nurses during icepocalypse. We are suppose to get 3-5 inches of snow throughout the night which may create delays in the morning. I need to remind mother nature I live in Texas NOT up north.
I am hoping Jude has a restful night tonight.