Post-Op day two

Today went well, I think.  I'm still so freaking happy that they were able to use her leads and just install the pacemaker generator.  I was thrilled anyway, but after hearing the buzz all day, I'm even more thrilled.  Apparently they were expecting the leads not to work and were prepared to do a sternotomy.  So, they were even surprised.  Did we get lucky today, or what?  

Since the surgery was relatively quick (by Harlie standards) I was surprised at how sleepy she's been all day.  And puffy faced, too.  Here's what she looked like all day...

 But, during rounds a few minutes ago, they said they weren't surprised at all, because she got a big dose of Fentanyl during/after surgery.  Hopefully tomorrow she'll wake up and be more like herself.

They had some adjustments to make with her pacemaker settings.  There was some commotion in the room earlier today that made me a little nervous.  Her alarms were sounding (the fast alarm that says "don't ignore me") and they were brainstorming about what was going on.

Basically her heart rate reading from her arterial line was different than what the monitors were showing (which read her heart rate from monitors on her chest).  The arterial line is the more accurate reading.  The nurse had to get the charge nurse, who had to call cardiology, who had to call the pacer people.  I gave them some time before I asked if there was a possibility that a lead could be bad and she said it would be very unlikely.  Whew!  And she said that the settings they put into the pacemaker in the OR just need to be tweaked a bit.  Her heart wanted to beat at a different rate than what the pacemaker was set for (I think).

That's why they will want to see her once a month for the first three months, so they can get the settings in a good place for her.  They will come back tomorrow to do more checking.  And she said that they might want to do a Holter monitor again to see what's going on.

They also did an echocardiogram, just to make sure it really was the pacemaker settings and nothing else going on.  Since they need the reading from her arterial line, they couldn't take it out (which was the original plan for today).  So, maybe they will get that all straight tomorrow.  Regardless, I feel much better now and am no longer worrying about it.  Well, seriously worrying about it, anyway.

Pacer readings on the left and echo on the right.

A brief awake moment.

They took out her foley catheter around noon and by 7pm or so, she still had not peed.  Then it finally occurred to me that - HELLO! - she's potty trained.  Duh!  We asked her if she needed to go potty (of course she said "no" which is her favorite word to use in the hospital).  But, of course, I ignored her and we put her on the potty anyway and she peed.  When they came to do rounds around 9:30 tonight, she was still over 500ccs positive in fluids (which means she needs to pee).  They wanted to cath her again if she didn't pee soon.  So, we put her on the potty and she went again.  So, no cath necessary, which is good.

They FINALLY got the orders and formula to feed her and we gave her two ounces (via g-tube, of course) around 10pm.

Her incision for the pacemaker generator, which is behind muscle in her abdomen.

A sweet care package from Harlie's Daisy Troop!  

She's sleeping for the night now.  I put her bed in the flat position and turned her on her side and she seemed to be very comfortable.  She has IVs (well, one's an arterial line, I think) in both hands - so she's hiding them under the covers.  And she has an IV in her lower leg.  So, hopefully tomorrow she'll wake up feeling more like herself.  And if we can get rid of some of those lines, she'd be a lot more comfortable, too.

I don't know how much longer she needs to stay.  I'm hoping for a Thursday discharge.

Oh, and in other news... right as I was walking into the CICU to see Harlie after surgery, I read an e-mail from Boston Children's.  Her surgery date is August 24th.  It felt so weird to be finding about another surgery date when she just finished with this one.  That poor kid.

The date is definitely later than I wanted.  This means that she will most likely miss the first week of school.  I was thinking that if this happened, I would aim for surgery sometime between Thanksgiving and Christmas.  But, Tom and I talked about it and that just seems worse.  So, we decided to take it and just get it over with.  Hopefully, it will go smoothly and she won't miss that much school.

She's going to do summer school this summer, so I'll ask her teacher if they can focus on the first several weeks of school so she won't fall too far behind.

Well, all of a sudden I'm so sleepy I can't type anymore.  I'll update again tomorrow, of course.

Thank you so much for all your love and support!
~Christy