Oakley Versus IPEX: Some Pictures to look at!

So, we are still doing "exercises" to get Oakley's lungs and diaphragm ready for extubation. There's no word on when we'll be doing that. We've had some more setbacks lately, but have mostly been due to human error. Two days ago, the insulin that they hung for fluid change was most likely too concentrated. Less than an hour after they hung it, his blood sugar dropped over 100 points. They gave him a shot of sugar (D10), and rechecked in 30 minutes, and it was still dropping. They lowered his insulin, gave more D10 and rechecked, and it was still low, but had creeped up about 10 points. They gave him ANOTHER D10 bolus, and stopped his insulin, and he shot up to the high 100's. They got another syringe of insulin, restarted him, and he was fine. They told us that they have no way of testing the syringe of insulin to see if it was the proper concentration, but that's the only reason anyone (including hospital staff) can think of to explain his hectic evening.
Then last night, less than an hour after his fluid changes, his blood sugar dropped from 200 to 48 (in an hour). It was a nurse Oakley hadn't had before, and she couldn't even figure out what to look for, so as she was calling the Resident, I started looking at his lines to make sure they were intact, and found that his PN (parental nutrition) was clamped off. This means he was getting insulin for an hour, but no sugar (other than in his feeds). I told her, and she told the resident Oakley's blood sugar was low, and got orders to give him D10 and to lower his insulin. (We obviously unclamped the PN too) The nurse was so antsy about the error, that she rechecked about 10 minutes after his D10, and since it was still low, gave him more D10, as well as upping his feeds. Surprise, surprise, they over corrected and he went super high (high 200's to low 300's), so then, they upped his insulin. They didn't just go up a smidge, they doubled the rate it was going at, and even though I expressed my concern that it would again yo-yo, they assured me that as soon as his sugars started to go down into the mid 200's, they'd go back to the previous rate, he ended back down into the 40's.
Through all of this, Oakley is still pretty gunky, and having to get his tube suctioned out every 20-30 minutes, and is getting no rest whatsoever. He was apparently receiving Ativan with the PRN (per Registered Nurse dose) of Dilauded he was getting from his nurse-though I was not advised this. If I had known, I would have told this new nurse that Oakley has a paradoxical reaction to Ativan. That means, when he gets it, instead of calming him down, he goes CRAZY! He thrashes and arches and shakes his head no. But, why would you ask the mom, who is in the room for? What? The free TV? No, she definitely isn't there for you to ask questions or keep informed as to what's going on. Really I was there to pull information like I was pulling teeth. (I later find out that the nurse not only didn't tell the doc on, she didn't chart the reason for the initial low. She was probably nervous that she was going to get into trouble, and became tight-lipped in defense).
So, at 4 or 4:30, there are 8 people in the room, trying to calm Oakley down, because he's ripping out of his restraints, and slapping the trach tube against his mattress, pillows, anything he can.
This is when I find out he's been given 3 doses of Ativan (in all fairness, it shouldn't have been on his PRN approved list anymore) from the nurse, in conjunction with his Dilauded. I also found out that even though he had vomited 3 different times, she had continued to give him Reglan, and was unable to give him anything for nausea. So, what I'm saying is, last night/this morning was fun. Oh yeah, we HAD made progress in his feeds, he was up to 20 mL's per hour of breast milk. They shut off all feeds when the over-correction that caused his super high blood sugar hit the fan. We have to start from the bottom again.
They ended up re-taping his tube, pushing it down a couple of millimeters because it had loosened up a little, and giving him a paralytic muscle relaxer, because it was almost the last thing in the arsenal.
Well, they just hung the fluids for the night, and since they dropped his feeds down, they went up on the sugar in his PN, so his blood sugar is 287 now...couldn't see that coming. Your reward for reading my complaining? Pictures: