Trying to keep Jude comfortable

Jude didn't have a good later afternoon nor evening yesterday. Poor Charlotte had a very hard time with him and had exhausted all medication when we got home. Jude slept for awhile but then got back up pretty cranky again. I just laid in bed beside him and that seemed to help him out. Jude can look pretty amazing at times and then at other times he will look like this. 

He is up and down, happy then cranky, healthy then sick. It's a never ending cycle. His oxygen levels have been dipping still but you can get them back to normal fairly quickly. There have been debates on whether his current situation is normal or deteriorating. There have also been debates on whether it's mechanical blockages, the weather, if he is sick, or if it's his lung disease. As his mom I think it's probably a combination with the abundance falling on a further deterioration of his lungs. I just feel it in my bones. Jude really likes it when people are cuddling him. It makes him feel better so Charlotte and I both have been climbing into his bed and just holding him. I can also still get smiles from him when I talk to him in my high pitch voice. 

I was talking to my co-worker today and I was telling her about the night Jude was first diagnosed. I remember laying on the parent bed in Jude's room at Cook's Children's. He was in the metal baby hospital bed and I was listening to him breathing. I was afraid to go to sleep and asked the nurses to put a monitor on his heart for me. I guess it gave me some reassurance that if something should happen to him I would be alerted. Little did I know that despite his seizures his health was actually pretty stable then. We have learned so much over the years and our life has evolved with our continuous medical education. I shake my head at the broad medical education we have without the degree hanging on our wall. I have always been pretty outspoken when it comes to Jude's health and what he needs. I may not have all the answers but I have always pushed to find them. However now it seems there really aren't anymore answers that will make a large difference. It's just finding a way to keep Jude comfortable and that's been challenging since Friday.