Jaxen - Burn ICU - Day 3

April 3, 2012
615am - This morning, Jerry and I woke to the sounds of bells, whistles, sirens, code alarms, pagers, and phone ringing.  Quickly followed by a fury of people running into our room.  NOT the way I wanted to wake up this morning.  : \  Our nurse, Wes, was here by himself and Jaxen's oxygen level was around 70% - needs to be in the 90's - and he started coughing.  Jaxen was fighting and Wes knew he needed another set of hands to help so he sounded the alarms.  The team showed up and orders were yelled, people were paged, and the started to bag Jaxen {breathe for him}.  Wes got Jaxen's oxygen tube suctioned out and Jaxen's vitals quickly went back up.  They were worried about him aspirating {throwing up and it getting into his lungs} or removing the breathing tube himself - so they reacted quickly.  Everything seems perfect now, they brought his medicines back up - they were slowly lowering it overnight - and they are going to hold off on another feeding for a little while.  Everyone apologized for waking us up like that, and as scary as it was - yes, I cried!! - we would rather them be on the ball about everything then waiting too late.  Nurses and Doctors are starting to change shifts, so I'm sure we will have some updates this morning. . . Overall - it was a pretty good night.  Mom and Dad got "some" sleep - the nurses were starting to feel sorry for us!

1000am - Some of Jaxen's favorite nurses stopped by to see him this morning.  He's quite the little spectacle on this unit.  They are all use to running in here and calming him down - he's just being himself!  The are so excited to hear that the plan this morning is to keep everything the same and give Jax {& Mom and Dad} a day of calmness so he can relax.  Tomorrow morning they are wanting to take out the breathing tube.  And we have been warned that it will be a difficult process.  Jaxen will have to come out of sedation and breathe 100% on his own at comfortable levels before they pull out the tube.  Now he is breathing on his own but under sedation he's not doing anything extra.  The machine isn't letting him forget to breathe.  They will need to know that he's going to keep his oxygen in the 90's without backup.  SO Mr. Jaxen will fight, kick, scream, hit, cry and just be down right ticked off for a while until they are sure he's able to handle it on his own - then they will take out the breathing tube.  {They say it's like having a straw down your throat - he HATES it!}  They are all confident that Jaxen will then return to his rotten, ornery self once he's unhooked from the machines and allowed to play and be mobile.  And EVERYONE is looking forward to that!  Again, just a matter of time. . . can't rush things because putting the breathing tube back in is NOT an option on their radar.  When it comes out Jaxen is going to be able to maintain and handle everything on his own.

I know I was secretly hoping that they would remove the tubes today but I understand the importance of waiting.  Jaxen is a fighter and he thinks he's ready but he also seems to think he is invincible! 

1030am - Jaxen's oxygen levels were lowered he's not getting any "support" - he is just getting help "maintaining".  His lungs are doing good and they are making sure that there are areas in the lungs that are strong and not going to collapse once the breathing tube is pulled and he's on his own.  One more milestone to reach sometime today on the ventilator - but they are confident that he could reach that milestone now, they just don't want to rush or do too many things at once.  Doctor's are making their rounds and once I get their update I will let you know. . . could be minutes or hours from now - you know Doctors!!

11:15am - Doctor's made their rounds.  They are so pleased at Jaxen's progress over the last couple of days.  I'm not sure how they see progress while he's under sedation, but they do - so that's a good sign.  They adjusted his ventilator again - getting close to not having to have it!!  They have plans to adjust the pain and sedation medicine overnight so that by morning he is ready to get the tubes out.  Jaxen and Daddy are napping peacefully. . . for the moment! = )

1220pm - Jaxen did it again - only this time he pulled out the IV in his arm.  The nurse came in to adjust the bed differently to try and keep him comfortable.  I was helping her move Jaxen down in the bed when I noticed that there was blood in his arm splint and upon looking further the splint was wet.  That's when we found that the IV was pulled out and Jaxen wasn't getting ANY of his sedation.  So you can imagine how the last couple of hours have gone. . . Ahh!!  It's a good thing that they had placed an IV in his foot yesterday so they were able to hook him back up pretty fast.  He's better now, under sedation again.  They are wanting to change the dressings on his burns but will wait until they know he is completely back under and comfortable.  He's also been ordered up a round of labs at 1pm - which means that they will have to replace the IV in his arm.  = \  So for obvious reasons it's good to have the backup IV.

325pm - Jerry and I got some lunch while they gave Jaxen his new IV.  And actually Jax did so well that he got two new IV's.  They also took an xray

Jaxen's burn dressing, diaper and bedding.  They upped his medicine so that they could clean out the burns - all the dead skin had to be removed - and Jaxen did perfectly!  He didn't even flinch until they were done and the medicine was applied.  His biggest flight is that he wants to lay on his belly and he can't with the tubes.  Other than that his nurses are calling him a Rockstar. . . Mommy and Daddy are still sticking with Monster!  = )

620pm - Doctor in charge tonight walked by Jaxen's room as he was fighting / biting on the breathing tube - which sounds the bells and whistles.  He just got another dose of the steroid - so that goal of 24-hour steroids has been met.  Right now the doctor's are disagreeing on what to do.  Tonight's doctor is wanting to do it now while there are more nurses and staff around to handle him verses waiting until 2am when they change his sedation and he removes the tube himself.  ALL his nurses are saying he's ready and fighting for the removal of the tubes tonight.  Will keep you updated!!  *fingers crossed* that no matter what the decision it's what's best for Jaxen.

900pm - Well it looks like the doctor's are going to wait until morning to pull the breathing tube.  Jaxen got so restless that the nurses spoiled him a little bit and picked him up allowing him to stretch and be held.  He cuddled with one of his nurses for about 20 minutes before they laid him back down.  Since laying him back down, Jaxen hasn't moved.  He's being a good little boy on that end.  However, the main concern now is his heart rate.  The peds doctor has been by to see Jaxen and has assured me that he's doing fine.  BUT his heart rate is slowly falling into the 50's.  So I ask that everyone keep Jaxen in their thoughts. . . he has to get that number back up, if nothing else, at least for me!  I'm barely hanging on with all these numbers and alarms!!

{check back throughout the day for updates...}