Had another crazy night and morning..again. No sleep (all three of us), lots of pain, and too much activity/interruptions to get Stephen to calm down and mellow enough for the pain to subside. He actually fell asleep last night around 10 PM watching tv and I thought we were going to be good for the night, but by midnight, he was up kicking his legs crying and in pain. After that, we spent the entire night chasing his pain.
I had told the pain person who came in the evening that four hours between his doses of oxy was too long. The oxy was taking about 30 minutes to work and then only lasting for about 2.5-3 hours. So for that last hour, he was in a lot of pain. And then he'd get so worked up, that it would take longer for the oxy to kick in, and so forth. A vicious cycle. He did get a few doses of nubain in between, but it wasn't enough to get him through. I think somewhere around 4 am we finally asked them to give him a rescue dose of morphine, but by then, it didn't even touch him.
And then add the pain on top of his issues with GI right now, and it's become a really crappy situation. He's apparently extremely full of poop (I never would have guessed he was constipated, but the surgeon saw it while he was operating). So they've been giving him all sorts of things to try to empty his bowels, but the pain meds are working against it. And then every time he bares down to try to poop, it hits even more. Again, a vicious cycle.
And this morning while he was sitting on my lap, I notified the dressing on his central line in his neck was wide open again. So they finally made the decision to pull it out. That became a whole ordeall in itself (think total restraint while they pulled the layers of tape off and out of his air, cut the stitches and pulled it out of his jugular vein), but it's out thank god and I think it will make Stephen more comfortable in the long run. Unfortunately, it hasn't happened yet.
Aunt Jess, Chloe and Norah did come for a visit today, but with everything going on they could only pop their heads in to say hi. But Stephen did respond to the girls which was nice.
Unfortunately, stress is compounding upon no sleep which is compounding on watching your child writhe in pain over and over again and the feeling that he's so traumatized at this point, it can't be reversed which is equaling very short fuses. Something has to change today, or I'm going to lose it or someone.