Jude had a pretty rough night. I could hear the nurse suctioning him and his oxygen level dipping on a pretty consistent basis. I would get up to check on him but there wasn't much more that could be done. When Charlotte got there she said she worked until about 11am to get him comfortable but he finally quit coughing. She said he is resting in his wheelchair now and seems pretty happy. I asked her how his lungs sound and she said "Like they always do". I replied "so terrible but you have heard them worse" and she agreed. I want to cry at night when I hear Jude's alarms go off and sometimes I do. Sometimes laying in the dark I just let the tears roll because I hate that Jude suffers with his respiratory issues. He coughs, gags, turns red, and almost throws up trying to clear his airways and breathe. Some days are better than others and I like those days! When he is smiling and happy without a lot of coughing. Primarily though it seems Jude just coughs all night long.
Yesterday we received a copy of Mike's FMLA paperwork that was filled out by Jude's doctor. On the line where it said "expected outcome" it said "terminal" and I just lost it. Right there at work I just bawled my eyes out. So today I had lunch with Mike today and admitted to him I am not in the best of moods. I told him I fluctuate back and forth between wanting to be with people and getting severely annoyed with people. I told him I don't want to hear about people's happy days, happy children, and happy existence right now. I almost want to shout "MY SON IS DYING" when people start telling me about their happy days or their troubles. Then I paused and said "am I terrible? am I awful Mike?? So many people have helped us and I should be kind and loving to them, so am I an awful person". He said "Not at all and it's exactly how I feel too". I almost felt relief because I was feeling so guilty and terrible.
So I am occupying my time when I am not with Jude on work and focusing on Emily's pageant in April. I am getting everything in order for her and getting everything paid for. It's very important to her and I want to make sure everything is set. I don't anticipate on anything happened regarding Jude getting more sick but in case I cannot be there I want everything to run smoothly so Emily's dad can take her. We have almost everything she needs in order with the exception of a few items we are going to try to tend to this weekend.
I would like to thank everyone that came forward and provided meals when Jude got out of the hospital. It was so amazing to not have to cook. Work is flowing well and the rest of our lives seem to be rather calm so we are just taking it day by day.