Saturday, March 26, 2011

Pre-Op Day

We went to DC on Thursday for her pre-op appointment.  It was fine.  Traffic up there wasn't that bad, which always makes me happy (yeah, it doesn't take much).  We met with a cardiac anesthesiologist (CA) - the one that was with Harlie when she was transported from Washington Hospital Center right after she was born.  She told me that she remembered Harlie from then (which I think is amazing considering how many kids she's seen over the years).

Anyway, she said that a CA and an ortho anesthesiologist (one that is very familiar with spinal fusions) will be working together on her case during the surgery.  I am very happy about that.  She will go to the CICU (cardiac intensive care unit) immediately after surgery.  But after that, we're not sure where she'll go.  She will either go to the HKU (heart and kidney unit) or the ortho recovery unit.  They will have to see how she's doing cardiac-wise to figure that out.  Should she be cared for by heart nurses or nurses that know spinal fusion surgeries and body casts?  I can't help but think that if she is stable cardiac-wise that maybe ortho nurses should care for her.  But, we'll have to see what the team thinks at that time.

At some point during our conversation she said that if a doc were to read Harlie's medical history and then meet her - they would not think they were the same person.  I just love hearing this.  It really goes to show how incredibly strong she is and how hard we have all worked to get her this far.  And by all - I mean everyone that's worked with us to help her.  Harlie's team of professionals is a large group of wonderful people that includes her nurses, therapists, nutritionist, teachers, etc.  One day I want to write something like "Meet Harlie's Team" or something with pictures of them.  I just think they are such wonderful people for doing what they do everyday.

It's really weird how I think she's doing so great and we are getting closer to normal as the years go by.  She's just a little girl to us now.  But, to them she is a complex medical patient.  It's just a weird transition to make as we go into another hospital stay.

Anyway, as far as details of the day go:

Surgery is scheduled for 8:30am.  We have to be there at 6:30am.  Harlie's ENT will go first and will work on her ear (in desperate need for that!) and put a new tube in.  This will be her fourth.  And the last time he put in a "t" tube that is supposed to last years - hers still only lasted less than a year.  I'm not sure what, if anything, we can do about the fact that her ear won't hold on to tubes.  It's frustrating because we really have to do everything we can to take good care of that ear - it's the only one she has!

Then he will do a bronchoscopy.  This is a really big deal this time.  It will be her first bronch since her last jaw reconstruction surgery in December 2009.  It has been well over a year since, so it's pretty safe to say that her jaw isn't going to recede anymore than it has.  And she's been doing great wearing her PMV (speaking valve, which allows her to inhale through the trach, and forces her to exhale out her mouth and nose) most of the day, on most days.  She's even learned that she can still cough while wearing one.  And sneeze - which is the cutest sound EVER!

So, I have high hopes that her airway is free and clear and is no longer obstructed by the base of her tongue.  This is the first time I've felt this way.  And it is a little scary.  Daydreaming about life without a trach is dangerous.  I'd rather not go there if we're still years away.   At this point, I would just like to be able to talk about it with her ENT as being a possibility in the near future.

On the negative side - if he comes out and says that her airway is NOT free and clear of the obstruction, I will be devastated.  Not that I've gotten my hopes up (even though I have) but because that would mean that two jaw reconstructions haven't worked enough to get that trach out.  I know she needs another one anyway (her jaw is very asymmetrical and chewing would be very difficult).  But if two didn't work, then who's to say that a third would?  Too scary to think about.

So, they said he needs an hour, so hopefully we'll know something by mid-morning.

After he's done, her ortho surgeon will start the spinal fusion surgery.  I think they told me that will take four or five hours.  So, it will be a long day.  This time we'll have internet access (YAY!) so I'll be updating the blog throughout the day.  It's a good stress reliever for me.  I'm not sure what it does for you.

So, after we were finished discussing the day and her history, we went down to the lab.  They didn't need to take that much blood (which is great).  But they are going to have two liters on hand during the surgery because they said that bone bleeds pretty heavily.  Yuck.   We got Albert - we've had him before - and he's really good.  He got her on the first try and without having to put the tourniquet on in six places first.  He put it on, and stuck her and it was done.  She hasn't gotten that if she stays still it will be over quicker.

Brandy holding Harlie during a blood draw.
After blood work, we were done.  It was about 2:00 I think.  Since we were there at lunch time, and we were HUNGRY I went to the cafeteria to see if they had anything interesting.  But, I couldn't do it.  We will be eating there more than I will like this week.  So, we stopped on our way home.

Harlie rode the whole way home with her right hand behind her back, as if protecting it.  Then we got home, and she walked around and watched a movie like this...

She didn't move her hand from behind her back until bath time that night.  Oh, if that's how she feels about one blood draw - I don't even want to think about how she's going to feel about wearing a cast!!!

Well, that's it for the day.  That night I went out with my girlfriends.  But, more on that later.

Thanks for reading!


Anonymous said...

I'll be thinking of you all over the next few days and weeks. I hope all goes smoothly and Harlie tolerates the cast.

Lisa B
Hampshire, UK

Kristen said...

There are so many things I could say in response to this post, but the thing that jumps out at me is that Harlie is a BEAUTIFUL little girl! Truly! She looks just adorable with her new haircut, her flower, and her precious little face! I love her to pieces!

I will be thinking of you all so much in the coming week(s)!

Anonymous said...

Our whole church is praying for Harlies successful surgery. They got familiar with her since her heart surgery and they always ask about her and how everyone is doing. Ron and my thoughts and prayers are with all of you. I will be looking forward to reading your blogs during and after surgery if you get the chance. Say Hi to Tom's mom for us. Tell her Pittsburgh is praying. Love Ron and Sue