Wednesday's update

The last few nights when I have gotten home from work Jude wants to be held. If I put him down he will become very rigid and cry. I am seeing an increase in suctioning and seizures when I get home too. He may do very well during the day but the evening presents issues. However once he gets to sleep he seems to do pretty well until 5am. 

I did check on him today and Charlotte said he has required a lot of suctioning and he just received Tylenol due to rigidity. I think something may be brewing with Jude but we will just have to wait and see what's going on. He has this normal little pattern he starts following when he isn't feeling well. Charlotte also mentioned how Jude's oxygen levels are starting to become an issue during the day and they never were before. She then pointed out Jude still laughs at Spongebob..........good old Spongebob! What would we do without him and Sesame Street. 

The hospice doctor wrote the final letter for appeal to the insurance company yesterday. I am just waiting on the letter and then the entire case goes up for review. I will be shocked if they do not approve his nursing but I was shocked they denied it to begin with. I have no idea why I was "shocked" because nothing should surprise me when it comes to how the sick are treated. However in this situation and Jude's state it was baffling. We had a fill in nurse on Sunday night and when I told her we were having to fight out insurance company for nursing due to medical necessity. She looked at me shocked and said "WHAT?", exactly. 

Anyway, let's hope Jude's evening is a bit better tonight.