Day +175- 36 hours after

 


Daylon and one of his favorite nurses, Ben

   To say the last 36 hours have been stressful would be an understatement. About 20 minutes after I last posted, Daylon threw up for the first of many, many times. By midnight, the night of his surgery he was inconsolable and crying in pain, itchy like I haven't seen him in months (EB is not only a painful disease, but a VERY itchy one), with blood pressure the highest I've seen it. He cried all night long. Pain meds didn't touch him, anti nausea meds didn't touch him, his high blood pressure meds didn't touch him. This continued all yesterday as well. Yesterday morning he started running a temp of 101.8F that Tylenol couldn't fix. The doctors changed out his high blood pressure medicine drip with a stronger med and are titrating it. He maxed out the highest dose on the titrate, so they upped that as well. High blood pressure could be caused by a number of different things, but when it's this high (and with his medical history) he is at a risk of a stroke. His latest blood pressure? 170/100. The fever is obviously the sign of an infection somewhere, but where? They've tested and cultured everything they can think of and the results are all the same...negative. His pain tolerance is one of the highest I've seen and he is showing signs of being in A LOT of pain. Why is that? The doctors said the pain should only be moderate.
  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. :(

 This morning he had an ultrasound of his kidneys preformed to see if the vessels in his kidneys are narrowing or something. I was told by the technician that things looked okay from what she could make out, but that the radiologist can see more. We're waiting on those results.
   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!