Janice the crisis nurse showed up at 4pm yesterday and our weekend nurse Allen guided her through a quick orientation of Jude. He talked to her about how we suction his throat on a consistent basis because Jude cannot expel the congestion build up he accumulates like we do (hence one of the causes of pneumonia). This was different for Janice since hospice generally only suctions the mouth and not the throat. However after about the 15th suction she mentioned how miserable it must be being suctioned so often because it's not comfortable. She is right. It's again the balancing act of wanting to help your child and wondering if your rescue measures are to much. She did so well last night that Jude got regular breathing treatments, repositioned, and so much more!
I don't think the hospice nurse was expecting Jude to be so sick last night since she was filling in for a home health nurse. However she was extremely well prepared and amazingly organized. Jude was SO SICK! We were wondering if this was a final decline for Jude. He was having such issues breathing. The nurse was amazing at making sure medications were delivered to help him and to reposition him frequently. By the morning Jude's blood pressure was only 56/35 and I just cried a bit. Jude's nail beds were pink and I had gotten him into a position where he was comfortable. His apnea stopped and Jude was sleeping comfortable so I left to take Emily to meet some friends. I checked in about every hour and Mike told me his mom came to visit. Once his mom got there he said Jude woke up and looked very happy. His color perked up and Jude perked up........sounds like good news doesn't it? It's amazing how when you have a terminal child you get so excited and then feel a let down with the same roller coaster emotion. It's knowing that he has perked up only to go through the same suffering again. I want to explain..............when Jude struggles he cannot get a breath and when he does breathe it's with his stomach muscles. It's load and rattly and he is in a lot of pain and cries out. He sweats profusely from respiratory distress and it's very hard to watch. No one wants to watch their child suffer like that and no one wants to lose their child so it's asking yourself and asking God what is best? What's the best route? How do you properly care for your child and what medical treatment should you provide? Does this make sense? We both wondered if maybe Jude is fighting so hard because of Mike's mom. She loves him so.
About 5pm Jude started having a very difficult time. He was in so much pain that I gave Morphine and Hydrocodene. He was arching, sweating, crying, and so upset. Mike's mom was still here and like a trooper I saw her swiftly wipe her tears away. Finally I got him a bit calmed down and he is currently resting in his wheelchair. His oxygen has dipped again and he is currently using 8 liters. His breathing is becoming rattled again and we will wait on the night nurse to get here. There is a part of me that wishes the crisis nurse was coming back. Sweet Charlotte will be here tomorrow and she is so amazing with Jude. I know she will be on top of his situation and call us if anything is concerning. Jude is getting his GJ button changed (AGAIN) on Tuesday so he will be transported via hospice. The case manager over Jude has been great. When I called her today with an update she said "Jennifer he is going to do this". For a second I felt defensive then I explained to her that I understood and that I want to keep him comfortable. I guess I have just never been in this situation before and I am not sure which direction I should turn but I am turning the best I can.
Thanks to everyone for reading, keeping up with Jude, and all your prayers. I think now it's time to pray for Jude's peace and what will be best...........whatever that may be. So I am going to go smell his sweet hair and give him big hugs before he lays down. Only love Jude......only love.