Chutes and Ladders

Hi All, 
There's not really a nice way to say this so I'm not even going to try. David's chutes and ladders game hit a big old chute this week. Ok, maybe I'll try a little. ;)  Last time I posted I mentioned that he wasn't eating much and was a little swollen and under the weather.  On the bright side his sniffles seem to be gone, maybe because the fog has lifted (outside anyway) and the sun is shining. Everything else has gotten worse.  The edema hasn't reduced, he has a hard time waking up and Thursday afternoon he started refusing food entirely. There's a part of me that kind of waited to see if he'd turn around, like he has a few times before, but this time it's definitely different.

At this point he's pretty much sleeping and I'm giving him pain meds as needed to keep him as comfortable as possible. He wakes up on occasion and mumbles a few things then falls back to sleep. He's confused sometimes and mumbles so you can't really understand what he's saying except occasionally he blurts out something obvious. Except when we tell him we love him, he always responds in kind. It's the only thing he responds to without fail. Earlier I was sitting near him, playing with his phone (he gets a lot of text alerts for things, he's funny)  and he woke up, looked up and said "You're a nice girl" then fell back to sleep. I don't know how I got so lucky that even now he's still as sweet as can be and has rarely been anything but. Last night he had a silly moment with Owen as Owen was saying goodnight. It's those things we'll remember most.

I told Owen that things weren't looking good on thursday and he replied, "Worst birthday present ever"  Seriously. My birthday is next friday, Owen's is Feb 17th and Dave's is March 3rd.  I told him it sucks for us but I think it's exactly what Dave wants for his birthday.

I asked the nurse what we were looking at for a time frame here. She got out the reference book they give you when you first get admitted to hospice and there are a few lists of things to look for and what it means as far as how far from death someone is. Handy list to have I suppose. We're seeing most of the things in the 1-3 weeks range but maybe little touches of things in the 1-2 days range.  Her best guess was about a week.

Owen has finals next week. What's your first finals in high school without a little bit of extra stress? My heart breaks for what he has to endure. He's amazing, truly. I keep forgetting to notify his principal or counselor or teachers of the change. Mom fail. I'll take care of it before monday, I've just been in a bit of a fog. I guess the fog moved from outside to in my brain.

I told Owen I'm a little scattered and stressed but that I'm trying to make sure everything he needs is taken care of and he smiled his "duh, mom" smile. I said, "not like you can't tell when I'm stressed."  He said something like "it would be more unique for you to be not stressed." And we both laughed. Laughing is good. My sis-in-law, Ricki, said "Can you imagine a life without stress? Being able to relax?" I told her I'm not even sure what those words mean right now. I know those days are coming and I don't know when that will be able to happen but right now it's enough to know that some time in the future things will be easier. I keep telling myself so I remember.

One blessing in all of this is that we've had 2 years to say all the things we want to say. Nothing is left unspoken so even though this caught us a little bit off guard with how rapidly he declined I guess in a way we're as prepared as we could hope to be.