Monday, July 12, 2010

Fontan Pre-Op Day

Pre-op today went well, I think.

She weighed in at 30 pounds and I think she measured 36.5 inches tall.  The first thing we had to do was get an EKG.  The nurse brought us a hospital gown and that's when Harlie got upset.

That was over fairly quickly, though.  And then came the torture of peeling off all the stickers.  They say it doesn't hurt that bad, but you would never think that based on her reactions.  She hates it.

It was very cool to be able to get urine for labs by taking her to the potty.  Last year they had to put a bag on her and that was a total nightmare.

Then they did an echocardiogram.  Her cardiologist said that there was some narrowing or something where her surgeon did the last surgery (he created another way for the blood to leave the heart).  But she said that it's mild right now and they would leave it alone and not try to do anything during the Fontan.  The risks outweigh the benefits.  So, we'll see how that goes over time.

Then we went down to meet with the cardiac anesthesiologist.  Then after that we went for chest x-rays and blood work. Both departments were super busy. But, luckily, our nurse practitioner (NP) who gets all this set up - came and got us to go see her surgeon, Dr. Jonas.  That went well.  Nothing new, which is good.  I feel like it was less stressful than last year when we sat down to talk about the Fontan (because we thought we were getting it then).  At this point, I'm not sure if I feel better about it, or if I just have my game face on.

The risks for brain damage or death is about 3-5% for the average kiddo getting the Fontan.  For Harlie the numbers are 5-6%.  They say that those numbers are high for them, but they seem pretty low to me.  Our NP said that I am the only parent who thinks that.  So you can tell my perspective is completely off - thanks to her previous 14 surgeries and all the odds she's beaten so far.

Mainly, the risks are excessive bleeding, infection (higher for her because of her trach stoma being so close to the incision), and pleural effusions.

We gave consent for the surgery and headed back downstairs for chest x-rays and blood work.  We chose to do the x-rays first, so we could leave the hospital the second they finished the blood work.  That way Harlie wouldn't be upset for the x-rays and we could somewhat reward her for the blood work by getting the heck out of there.

When she went into the x-ray room, she went straight for the chair where you sit for the x-rays.  She got right in with no complaint.  And when the x-ray tech asked her to raise her hands for the x-ray, she did exactly what she was told.  Then she got down and went on about her day.

Then we went for blood work.  That was a nightmare, as usual.  She sat on my lap in the chair and did so without a fight.  But when the tech got out the syringes and put on her gloves, Harlie put both of her hands behind her back.  The tech asked her if she was hiding from her.  It kills me to think about all the knowledge that girl has about unpleasant stuff.

They wanted to get three vials of blood, but they only got one and a half.  Her blood was so thick (since she's been off aspirin for five days in prep for the surgery) and they (the lab tech had to call for help) had to stick her several times.  It really is parental torture to have to hold her down to let them hurt her.  We just keep telling her that we are so sorry and that we love her.

After that was over we bolted to the car to go find something fun to do to reward her for a long, tiring day.  Tom said that he wished she could eat by mouth so he could give her whatever treat she wanted.  Instead we found a playground.

Okay, this picture doesn't do it justice, but there were these squirrels...

that are black.  And shiny.  And their fur looks softer and thicker than a normal squirrel's.  Weird.

Tom was playing around with the color accent setting on the camera and it came out like this...

In this picture you can see a little of my pink hair.  There's more under the top layer.

The playground also had a fountain area for the kids to run around in.  It had just rained when we got there, so we had the place to ourselves.

This was my view walking back to the car.  Is there anything more sweet than a daddy carrying his little girl?

There are some things that Harlie does that makes me so thankful.  Tonight at dinner she was playing with her Mickey Mouse and she did this...

Totally normal, I know.  But I don't take anything with her for granted.  Earlier, when we were leaving the Ronald McDonald House, she put Mickey on the slide, counted to three and pushed him down.  Make my heart melt!

After dinner we went to Target to get some Pedialyte for her overnight hydration (this is when tube feeding comes in pretty handy).  We were just walking around and just happened to go by the toy section.  She went crazy over all the Toy Story 3 toys.  But we left and she kept signing "dinosaur" (Rex from the movie) and pointing behind us, which told me that she wanted to go back to the toys.  So we did and Tom put her down and let her walk around and look at them more closely.

After looking around she went and grabbed a box with Jessie and Bullseye in it and threw it in the cart.  Oh, there goes my heart again.  Another totally normal thing that she's NEVER done before.  She never asks for anything - other than an activity (like watch a movie, go outside, etc.).  So, of course we bought it for her.  And, let me tell you something - if we were rich I'd buy her anything she wanted after a day like today and knowing what lies ahead.

We have to be at back at the hospital at 7:30am and her surgery is scheduled for 9am.  Her surgeon said that it took the anesthesia team two hours (which is very long) to prep her for surgery last year.  So, we are guessing that will be the case again this time.  Then the surgery will take about three to four hours.

I will, of course, update as I can to let you know what's going on.

Thank you so much for all your thoughts and prayers.  You have no idea how much that helps during times like these.  We are so very appreciative!


Anonymous said...

Not sure if it will hold but I clicked all 3 reactions...haha because you all had some normal fun; boo hoo because of all that she endured today: Grr because of needing the fontan.

Beverley and Leyda

Anonymous said...

I am praying for Harlie and your family! You guys are so amazing and I pray that God watches over Harlie during surgery tomorrow. Your strength is amazing and I can't even imagine the emotional coaster you are on right now. Hugs from Richmond! ~Shannon

ANewKindOfPerfect said...

I am glad that today went well, and I pray that everything tomorrow goes as planned. How great that Harlie showed you that she wanted the toy! I would have bought it too. :)

Josie said...

Hugs to all of you for all you've had to endure. I know it breaks your heart to see her go through all of these procedures, but you're such a warrior for her. Praying that things go smoothly tomorrow and that she's on the road to recovery soon.

Lots of love,
The Kurz Family

Janis @ Sneak Peek At Me said...

*tears* you had me at Mickey Mouse...

Harlie is one courageous girl. I am sending all my prayers to be with you both tomorrow.


Rene said...

I don't know how to feel. Happy and excited that her Fontan is finally happening. Scared and anxious because it's another surgery. I will be reading every update, as I always have and praying every step of the way. This is such a huge milestone!

Heart Hugs!!!!

Anonymous said...

Sending lots of hugs! Wish I was there waiting with you. Love, Brandy

Anonymous said...

Keeping you all in my thoughts and hoping for a relatively easy recovery for Harlie.

Lisa B
Hampshire, UK

Anonymous said...

Christy - Keeping you and your family and especially litte Harlie in my thoughts today. Your update from yesterday was wonderful - I loved those pictures with Mickey and the one with your husband and Harlie. Just beautiful! Hang in there today and know that we're all praying for you.


marty1210 said...

Hey Christy - We live in Arlington so please let me know if you need our help on anything. My number is 703-919-4526.

My husband, Al, is from Pittsburgh as well so I know he has that in common with Tom.

Our prayers are with you.