Isaiah 7.17 : Updates, etc.

Another night in the PICU, hopefully moving to the floor later this morning if all goes well.  He's got a feeding tube in his nose that they've been doing med and feedings through since the IV failed yesterday afternoon.  His hand is still a bit swollen, but not nearly as bad as before.  We've gotten up to use the bathroom a couple times since they removed the foley.  As Olaf says 'All good things, all good things'.  Rachel stayed the night again as I've been close to losing it emotionally the last day or so.  I felt like there was too much movement in his midface when he was scrunching his nose with the nasal trumpets in.  He would scrunch and his whole midface would move like 3/4 of an inch and make this crunching / clicking noise.  I first thought it was the sound of his bones hitting, but realized later it was the dental splint.  It just gave me the shivers and I'd start flapping.  I just don't do well with blood and all this stuff...

Little man is in a ton of pain right now so prayers are still very much  appreciated.   As he's more and more aware of everything around him and on him and his cries of pain and frustration are getting louder and more frequent. It kills me to see him like this and I wish I could take it away. He grunted in anger at Dr Fearon when he saw him before lunch when he showed us how to turn the screws on the RED. Apparently he's done really well since he didn't need a transfusion and around me 75% of kiddos getting this surgery need one. He's already gotten up and walked about a quarter of the PICU and we've started feeds through a feeding tube. Right after they took his arterial line out his other iv started failing and his left arm and hand swelled up and turned purple. They had to remove the iv and his hand is back to its normal color but we're still waiting for the fluid in his arms to dissipate but it's definitely getting better slowly. Everything went so...

Last night I went back to the hotel with Aunt Rebecca and Elena while Rachel stayed in the PICU with Isaiah. We're trying to rotate so one of us gets a good nights sleep at least.  He was awake more overnight.  Apparently Rachel said there was one time he woke up long enough to say 'My head hurts' and went promptly back to sleep.  Mostly he was up briefly to moan or whimper since I can't even imagine the pain he's probably in.  There was a steady stream of Minion movies, Wall-E, and other disney flicks on the tv all night long. The orange things in his nose are the nasal trumpet  He also apparently coughed out a pretty big blood clot about the size of a golf ball that required a good amount of clean up.  Not fun sounding, but its good he was able to cough it out since its not something they probably could have suctioned out.  After that his airways were more open and his blood oxygen levels stayed much higher.  He's been on some good pain ...

We're in the PICU with him now.  He's not waking up much and we need to make sure he does more soon.  He's got nasal trumpets, a feeding tube, suction tubes in his mouth and all sorts of other goodness going on right now in addition to the RED device  (the big purple thing on his face) I'm going to try to put all the pics behind the jump, so skip over if you're a little squeamish. If you want to see pics click 'read more'