Ugh, recovery

Don't get me wrong - I was SO pleased that Emma's surgery went well.  But it actually wasn't that stressful for me.  Recovery is a different story, which I kind of anticipated.

Emma has been in the PICU since Friday night around 9.  It is now Sunday night/Monday morning at 12:30 am, so 51 hours later, here's what we've been through:

Baby girl has been intubated twice, and they suspect that it may have stirred up some tissues and caused some bleeding.  She has been lying on alternating sides of her face, so that dried blood has combined with a good bit of drainage to create some nasty stuff that is leaking out of her nose and her mouth in very large amounts.  I'll just leave it at that.

Emma started off on the sedative propofol.  Sound familiar?  That's because it killed Michael Jackson.  So for a few reasons, children aren't allowed to stay on propofol for a long time (I can't remember the exact time period.).  Emma did ok on the propofol - she would get a little wiggly, so they would add another dose and voila!  Back to calm, peaceful sleep.

All that changed this afternoon.  Emma came off the propofol and was put on a combination of 2 other sedatives/pain killers (versed and fentanyl - fentanyl is 100 times more potent than morphine...file this away for a second).  Not long after, Emma started squirming.  We would get the nurse, she would alternate giving doses of the 2 meds, and Emma would calm back down.  Repeat this 4, 5, 6 times...whatever it was.  This is basically a game to figure out the best dosage and timing for Emma, and we were warned that it would be tough.

Then things got real.  Emma REALLY started moving and stirring up her secretions VERY quickly.  So one second, she's still, and the next second her oxygen monitor is going off because she isn't breathing through the secretions.  The nurse and respiratory therapist then have to immediately give her a dose of medicine AND suction out the breathing tube in her mouth.  Of course, suctioning draws the breath out of her, too, so she's not getting oxygen in THAT process, either.  It's very scary and very stressful.

This happened a few times, and it got to the point where they decided to put Emma on a low dose of a paralysis drug.  Therefore, she can't move as much and disturb her secretions as much, and they'll just suction her out on a regular basis.  Girlfriend is really resisting these powerful drugs and is trying not to take this whole hospitalization lying down - literally.  So here's what we're currently dealing with:

Because Emma is now somewhat paralyzed, when she wakes up a little from the sedation, she's moving a tiny bit, and her heart rate shoots up.  She hears one of us talk, even a tiny whisper, and her heart rate shoots up.  She hears me close the footrest on the recliner, and her heart shoots up.  What this means is that she's awake, she's trying to move and can't, the breathing tube is lodged in her throat, and she's angry.  When she's angry, her heart rate goes up.  They decided to give her both sedatives at the same time as opposed to alternating, which seems to have helped, but hasn't totally solved our problem.  So frustrating.  Again, she's putting up a fight against some pretty powerful drugs.

The next step is to keep the room as dark and quiet as possible.  Think old-school librarian, shut-your-mouth quiet.  Whispers are waking this child up.  They are giving her doses every 30 minutes in the hopes that she will eventually settle into a deep sleep.  If we can't achieve this, then she will have to be on a steady drip and/or higher PRN doses, which creates problems when they try to take Emma off of the drugs in preparation for waking up and extubating.  These drugs won't exactly make Emma addicted, but she won't feel well at all when she wakes up.

Speaking of waking up, Troup told us today that they will probably wake her up Tuesday or Wednesday.  Russell and I are assuming it will be Wednesday, but we'll see.  The process to wake her up is to take her off of these 2 sedatives, put her back on the propofol long enough to let the other sedatives really leave her system, and then extubate.  Propofol is a type of sedative on which you awaken completely 5 minutes after it's turned off.

A few bright spots: her chest x-rays have shown that her lungs are holding up quite well to the intubation and lying on her chest.  She has been urinating a lot without a catheter, so that's one less potential area of infection to worry about.  Her 3 incisions look great, and the incision that opened right after she was born has a much lower chance of opening back up this time.  Two nurses rebraided Emma's hair into French braids.  I've got to tell you: seeing your child puffy from a breathing tube, with a tube shoved in her mouth, and her mouth hanging open is not pleasant...but the French braids make it so much more bearable.