Well Jude had a craptacular night.
I reached out to Charlotte yesterday who informed me that Jude had a good morning. However that afternoon was a different story. She explained he was very rigid, toned out, had a high heart rate, and eventually had to go to the mask for O2. She ended up giving him Ativan at about 5:15pm. When I got home he was sound asleep. He ended up waking up by 6:30 and went back into the same mode. Throughout the night he was high toned with a high heart rate. We gave him his scheduled Valium and Clauzepam but nothing was working. Around 10pm I reached out to Hospice to see if the Morphine could be given even though we had given the Ativan at 5:15. They said it could be and that it sounded like he needed it. Jude's O2 level was fine but his breathing was very loud, rattling, and he sounded like pop rocks. My guess is that Jude was once again panicking because he felt he couldn't breathe. Maybe that's what he has been doing throughout this toned out sessions since the July surgery? Struggling to breathe. So I gave him the Morphine and it did...............NOTHING! Sigh. Jude finally went to sleep about 1am only to be back up about 1:52am crying, moaning, and breathing rapidly. This continued through the early morning hours. He would fall asleep for 45 minutes to an hour only to be back up again. We would suction him, clear him, re-position him, and do whatever was necessary to get him back to sleep comfortably.
Hospice called this morning to check on him and they are going by to see him today. They again mentioned he needs night nursing, but it still has not been approved. I talked to them about a crisis nurse, but the problem is if Jude has 3-4 good hours they will pull her off the case. Jude can have several hours of "good time" and then 20 hours of bad time. You just never know. He may have one good night and three bad nights or vice versa. It's a toss up.
I told Mike last night that I felt bad giving Jude any Morphine because it would just be giving him more medication. He said that he has gotten to the point of accepting that it's about keeping Jude comfortable now and he is right. Jude is just not his little self anymore. We do get good hours with him and we are thankful for that but his distress seems to be outweighing those hours lately. I feel for Jude. I kiss on him a lot at night and try to make him comfortable in his little bed and let him know we are here for him.
I know everyone is praying and I appreciate that. You don't have to tell me that you are praying......I know you are :). I also am going to ask that if you come visit Jude to please not put me in a position of consoling you about his condition. I am strong but not really that strong. Just know he is a happy little boy that is very loved and he is fighting the best he can through this. Charlotte said yesterday he will beat this and I love her positive attitude.