When I got home tonight Jude was not well. He was very toned out and after Charlotte left he only continued to deteriorate. Soon Jude was red faced, arched back, and screaming in pain. This went on for hours until I called hospice. They couldn't even hear what I was saying but only heard Jude screaming in the background. They could barely make out what I was saying and just replied "We have someone on their way". It took a bit but a nice saint of a man showed up at our door and really helped Jude. After several medications Jude was more calm and lying comfortably in his bed.
The nurse told me that he normally works adults and that Jude reminded him of his COPD patients. He said that the look in Jude's eyes is panic because he cannot breathe. That's probably giving him anxiety which is causing other issues. For instance Jude had a massive seizure tonight that the nurse witnessed. This all correlates with what Jude's pulmo said that Jude is panicking due to his inability to breathe properly. HOW AWFUL! ugh. He said Jude's lower lung lobes sound terrible and he suggested keeping him medicated for comfort.
So I told Mike that the truth is that even though I wrote that poignant blog about putting Jude on hospice I never really grasped the reality of it all. I don't want to lose him, Mike doesn't want to lose him, our families are still hanging on too. We keep Jude hanging on. We keep Jude fighting..........it's us and it's the truth. I really believe Jude fights for us. I talk to him sweetly each day encouraging him and I won't stop that. However............Jude's in pain and he needs comfort. I need to stop worrying about medications and give him what he needs based on the doctors assessment. We all know children with various disabilities but those issues combined with lung disease are just heart wrenching at times.
I will talk more on this tomorrow but I just wanted to give an update.