Cardiology Pre-Op Appt.

Yesterday we went to Northern Virginia for her pre-op appointment with her cardiologist.  While I wasn't feeling 100%, I was certainly better than I was on Wednesday.  The trip went okay, all things considered.  Since I was in bed all day on Wednesday, I didn't get things ready like I normally do (put gas in the car, clean it out a bit, pack her bag, etc.).  So, we jumped in the car and headed out of town and I totally forgot to look at the gas gauge.  Oops.

So, we got on the HOV, which is a gamble.  And even though I feel like we went there just recently, I couldn't remember how to get there.  This appointment wasn't at the hospital (which I could drive there with my eyes closed) it was at the outpatient location in Fairfax.  Anyway, I forgot that there isn't an exit for 495 from the HOV.  Darn it!!!!  So, my gas light is on, I'm driving in the wrong direction and can't do anything about it because there's no exit for MILES and the traffic is backed up and crawling.  UGH!

Finally, we get to an exit (the Pentagon) and I felt like it was too risky to turn around and get back on the interstate without putting gas in the car.  It was LOW.  And one thing I have noticed about Northern Virginia is that there doesn't appear to be very many gas stations.  So, we drove for a bit and asked another driver where a station was.  Luckily it was fairly close and easy to get to.  Unfortunately it was super expensive (like 30 cents more per gallon!) and when leaving the station it forced you to go in one direction (not the way we wanted to go, of course).  So, after breaking a few traffic laws (I saw no reason why you couldn't make a u-turn there!) we were back on track.  Whew!

And we arrived only 10 minutes late.  Not bad.  Funny though - when the nurse took us back, she said, "I was thinking it wasn't like you to be late".  HA!  So, I thought to myself, she thinks we're someone else (because I'm always late) and I don't think I've ever seen this person in my life.  But when we get in the room she makes a comment that she remembers Harlie very well.  I always feel so bad when I don't remember people who remember us.  But, in my defense, there have been so many people...

Anyway, Harlie had an EKG and an ECHO.  And she hated every minute of them.  Neither of these tests hurt at all.  But, the whole thing freaked her out and she cried and cried and kicked her feet and was super mad and probably super scared.  And it took two of us to hold her down.  In her mind, I can only assume that she has no idea what's coming next.  It kills me.  One day it will click for her, I just don't know when that will be.

Heart-wise, she's fine.  I've always heard that about a year after the Fontan surgery (which she had in July 2010) that they do another cardiac cath and possibly close the fenestration.  I know most of you have no idea what I'm talking about.  But, right now, it's just too hard to explain it - so don't worry about it for now.  Her cardiologist doesn't want to do that anyway.  She wants to wait longer.  The issues that Harlie's heart has right now are:

There is still some muscle causing a little bit of obstruction when the blood tries to leave her heart to go to her body (this is where they did the DKS surgery in June 2009).  Right now it is still considered "mild" so that's good.

Something about the pressures in her Fontan are a little high.  But, it's okay.  She was crying, which makes the numbers be at their worst.  And even at their worst she wouldn't do anything right now anyway.  So, all's good - for now.

She wanted to check out Harlie's heart rate.  Which means a Holter Monitor.  Ugh.  After the two tests earlier, I really did not want her to have to have a Holter Monitor.  She has to wear it for 24 hours.  And while I really would rather her not have to deal with it - a) she couldn't have it done in the hospital after surgery because of her body cast and b) I couldn't live with it if I didn't do the Holter and there was something wrong.  So, even though I am sure everything is fine, it is better to be safe than sorry.  Even if that means that Harlie will be mad at me.  Yet again.

As we were leaving, Harlie kept signing "off" - she did not want to leave with those things stuck to her chest.  We finally got her dressed and out of there with her holding her chest and stomach protectively.

Of course, at the time, I totally forgot about gymnastics this morning.  So, I struggled with the decision to let her try to go and participate (with the leads, cords and monitor I'm thinking it would be difficult) or keep her home.  I hate her missing it since she loves it so much.  But, last night her pulse ox alarmed several times with low oxygen sats (74), which is weird because she's been hanging out in the high 80s.  And for the first time in MONTHS we had to turn on the oxygen concentrator.  So, combine that with her runny nose she's had for the past few weeks and we ultimately decided to just keep her home for the day.  No gymnastics.  No school.  Total bummer.

Back to the appointment, the only thing that really bothered me was that her doc said that the anesthesiology team would make the decision as to who is her anesthesiologist - a cardiac anesthesiologist or one with more ortho experience.  ACCKKKKKKK!!!!  WHAT?!?!?!

You might remember this recent post which would explain why the thought that she wouldn't have a CA totally stresses me out.  Not that any other anesthesiologist wouldn't have made the same decision - but still.  And when he did chest compressions, he knew he was dealing with a Glenn circulation - not sure how that plays into it.

So, the anesthesia team will decide if she needs one more experienced in spinal fusion surgeries or in the heart.  They could do a combo - but not sure if they would have a CA with an ortho consult or the other way around.  I suppose the combo would be fine - but to not have a CA in there at all would just stress me out.  Period.

I guess at this point, I know just enough to make me scared.  If I knew more, maybe I wouldn't be so scared about their decision.  But how in the world would I know more about anesthesia???  We have an anesthesia pre-op appointment the week before her surgery.  So, I'm just not going to worry about it until then.  And then we'll talk face-to-face and I'm sure I'll feel better about it after that.

The trip home was fine.  No traffic, really.  We stopped for lunch and let Harlie go potty.  She walked through the restaurant holding her chest and stomach and walked like she was hurt or something.  I guess she's got a little drama-girl in her.

Then, that night Tom and I went to a seminar for parents who are transitioning their special needs kids into Kindergarten.  I will talk about that later.  This post has gotten long enough!

As always, thanks for reading!
~Christy

ps - I might be going a little crazy with the signing links.  Sorry! But I can't help myself!  It's so fun!