|Daylon and one of his favorite nurses, Ben|
When he's not crying, he's moaning and flailing about. The PICU nurse and I took turns standing at his bedside during dialysis to hold him down and prevent him from loosing his run (and all the blood that was in the machine at the moment). It was a five hour run that lasted 7, but in the end they took off one whole kg. so that's good.
He's breathing has become very rapid (like 60-80 breaths a minute). His nostrils are flaring and he's needing to breath using his belly instead of his chest.
If you add this pot of mess together what does it equal? One sick kid and a heard of stumped medical personnel.
They switched his meds all around every which way and he's currently on a drip of pain meds and a drip of nausea meds with bolus of medicine for his break through symptoms. Besides a slew of blood work, he's had a chest x-ray which came back crystal clear, a head CT which showed that there are no new hematomas, but there is still a bit of blood left in his head and a pocket of air has found its way inside his skull. That can contribute to some of the extra pain at least. Unfortunately, the CT came with a price. The foam pads they put in to keep your head in place hit the Burr holes and he's started to ooze and bleed from the site. :(
It was decided also to dialyze Daylon today to see if vomiting for weeks has lowered his dry weight. If his dry weight (the weight he should be) has been lowered, then they aren't pulling enough fluid off of him which can cause high blood pressure. To everyone's surprise, when Daylon was weighed a bit ago, he is up a full kg. in 15 hours. It's surprising because he didn't take in a kg of fluid.
We're grasping at straws, but at least there are still straws to grasp at. :)
Well, that's the update in a nutshell. I need to get back to Daylon. He's starting to wake up. Please keep the prayers coming!