Day 126

I am so sorry for the delay in posting... We've spent the afternoon putting out fires, quite literally. What was supposed to be a quick trip to the house to get some of the junk out of our car turned into firefighting school when Trent accidentally set the pasture on fire. He tried to burn a pile of trash before we left, and the wind quickly caught the flames and spread them. He had a square of carpet and I had a little shovel, and we did our best to put the fire out before it did too much damage. We did eventually get it under control (conveniently right before the fire trucks showed up), but not before it burned up some of the woods and pasture. It could have been much worse, so thank God for shovels and carpet squares!

While we fought fires, Holden continued his own battles here. I wish I could report some good news, but unfortunately he's had another rough day. He's been really uncomfortable and in a lot of pain. All he does is whine and cry when he's awake, which isn't often since he's sleeping all of the time. We've had some trouble waking him and keeping him awake, and when he does open his eyes it's so sad that I pray for him to go back to the relative comfort of sleep again. He's four days post-op, and he should be getting a little better each day... Instead, he's getting worse. The doctors are doing all they can, and everyone is thinking and praying and watching and waiting. We're about ready for a turnaround here.

The only good news is that his lungs seem to be pretty clear for now. He's still on a lot of oxygen support, and we've been unsuccessful in weaning that at all, but we haven't had to deep suction him for almost 24 hours. He's been coughing on his own a little bit more, which is a huge help.

His kidneys are still on vacation, and nothing we've done has coaxed them back. He's on a tremendous amount of diuretics, and even with extra doses we've only been able to get small amounts of fluid out of him. He should have responded much more dramatically to the extra doses, but his kidneys didn't get the memo. When we did the bladder scan last night, he only had 20 mls in his bladder. That means that the fluid in his body isn't where it's supposed to be... It's just floating around, which they call third-spacing. That third-spaced fluid needs to get back where it belongs so we can get it out of his body. His BUN and creatinine (numbers to measure kidney function) are creeping up, and if his creatinine isn't lower in the morning, we'll have to start him back on one of his heavy duty heart meds. Excess fluid puts a lot of excess strain on his heart (which is why almost all people with heart issues take "water pills", or diuretics). We don't need any new issues in the heart area, so we're praying hard that he starts peeing like he should. (If you would have told me a year ago that pee would be included in my most fervent prayers, I don't know if I would have believed you. Yet here we are.)

He's also still throwing up blood. He's not vomiting like he did before, but when he does it's rusty colored with what looks like coffee grounds in it. That's digested blood. It's also coming out of his gtube whenever it drains and coming out in his diaper with the few bowel movements he's had. At four days post-op, we would have expected the blood to disappear. I'm really hoping that this is just a little bump in the road, and not a sign of something more serious.

We knew going into this that Holden is the master at keeping us on our toes, but I'm done dancing now. If he continues this downward trend tomorrow, this paranoid freak of a Mama might truly lose it. I really keep thinking that he deserves a break at some point... Right? I'm trying hard to hold on to optimism and faith right now, but honestly, it's hard. I struggle the most on days like these. I know it will get better, but it doesn't seem like it at times. It's hard not to let hopelessness take over every once in a while. It's not a pretty admission, but it's the truth.

So please- Cross your fingers. Hold your breath. Light a candle. Spit three times. Say a prayer. Please do whatever you can to send some of that goodness his way. We would love for our feisty little man to get his fire back soon.