Sleeping With The Lights On

Today was another rough day. It started off well as Nick was sitting up in the chair and he took two walks! The first was one lap and the second was two laps. He is still requiring a fair amount of oxygen all the time and even more when he exercises. This is a picture of Nick's "food" that he gets via the IV. The yellow one has all the carbs and protein, the white one has the fat. Nick actually ate a little bit of food today but, it all must have sat in his stomach because later in the evening it all came back up. Nick is still suffering with pretty bad neck pain, which leads to pretty bad headache, which leads to nausea, which leads to throwing up anything that is in his belly. No one has any specific diagnosis. So after this episode Nick got a bunch of new medications to try and help the pain, the nausea, the headache, and then he slept the rest of the evening. I cannot begin to say how hard it is to watch this going on day after day after day. Nick has quite a list of things that are being worked on in order to get him well. His lungs, the fungal infection, the medicines, the lack of energy, his weight loss, his inability to eat due to sore throat from radiation, his headaches and neck pain, the nausea and vomiting, his low counts, his platlets and red blood cells that keep dropping and needing to be replaced, his damaged salivary glands that have given Nick "dry mouth" which makes it impossible to chew and swallow food properly, causes dental and gum problems, and creates the grossest, thick, and disgusting snot luges (sp?) in the world that Nick has to try and get out of his throat. And I won't even get into the emotional toll this has to be taking on Nick, because it sure as hell is taking a toll on me. The lack of sleep and the endless hours are starting to wear me out. I am exhausted and always have so much to do before I sleep. Despite this huge laundry list of issues, there has actually been talk of trying to send Nick home on oxygen, on Ambisome, with his PICC line, and even possibly the IV food. While I can handle all this, I feel strongly that he is by no means healthy enough to come home and run back and forth to the outpatient clinic for care! And I haven't even addressed the plan for continued treatment of to keep the CML at bay, which the doctors don't know what they will be doing yet, due to his low counts. I am going to bed now...I think I am just overly tired and need some rest.
As Nick said to me tonight when I left..."I will be better tomorrow Mom."