It was very slow at work yesterday due to the holiday so I left about 3pm to try to catch Hospice at the house. Unfortunately, I was to late and they had just left. The hospice nurse said if Jude spikes a fever again he will need an X ray and that his lungs sound about the same. Which means his lungs sound raunchy (sp?). Jude was very happy yesterday when I got home but he did look pale to me. Granted he isn't getting much vitamin D but he still looked pale. Charlotte said as the day came to a close that Jude's lung sounds had deteriorated from how they sounded that morning. Right before Charlotte was going home for the day Jude began to get stressed and toned out. So about 6pm I gave him some Ativan and he began to calm down some.
Jude slept fairly well last night. He woke about twice in the 3am hour crying. I am not sure if he was hurting or just wanted to be rolled over. I repositioned him and he went back to sleep both times. Then around 7 this morning he was gasping but his o2 level was at 100 so I didn't worry to much.
We received a phone call yesterday that the night nursing has been approved from 10-7 temporarily. I know this should be a good thing but I almost felt let down when I heard this information. It's yet another person in my house and they will be taking over MY job with Jude. SO I am struggling with knowing this is probably best for Jude but emotionally not the best for me. Physically I am sure it will be great to get sleep but I also know I will still hear every beep and every alarm. I talked with the nursing agency last night regarding what we are looking for in a night nurse. So they are currently searching for someone and we will know soon who that person will be. We also still have some respite hours and that normally consists of Mike's mom coming to sing to Jude and tell him stories.
Emily and I are both not feeling very well and "ain't nobody got time for that". So I am hoping it goes away very quickly. I will check on Jude in a few hours and see how his lungs sound today and how he is acting. It's such a balancing act with Jude and knowing when to run to the doctor and when to just stay put. It's knowing there isn't much that can be done for his lungs because they are so tired and sick. So what do we subject him to and when do we just keep him comfortable. I am not a fan of making these decisions. However you know Jude. He can go from being very sick to wonderful within hours and also vice versa. If for some reason Jude is developing pneumonia again (and I am going to stay positive he isn't) it will be his tenth battle.......tenth. What a little superman.
Hospice left a really sweet gift yesterday. They made a replica of Jude's hand and also left his footprints.