Thursday, November 29, 2012

Cardiology Appointment Update- Hole in Heart :(

Yesterday was the day I've been dreading for a month now.  We had Haven's pediatric cardiology appointment at Children's hospital.  All month long I've been going back and forth trying to forget about it and worrying so much I could hardly take it.  I kept telling myself that the nurses didn't know what they were doing when they took the EKG and that her new doctor thought he heard something that he didn't.

Our appointment was at 9:00am.  First the nurses measured and weighed her.  Then they took another EKG.  I kept telling myself "everything is fine, everything is fine, everything is fine."  Haven did fantastic (of course) and excitedly counted all 13 stickers and clamps for the nurses.  And told them all about her stuffed pink bear she brought that she named "Pink Eyes."  And guess what?  The EKG looked great.  It didn't reveal any problems.  2 of the nurses then listened to her heart and they couldn't detect any problems either.  I was cautiously relieved, but I kept thinking "so what was wrong...?".


Then the doctor came in to give us the official EKG results.  Nothing.  He went on to say that sometimes the heart speeds up and slows in response to anxiety or other emotions.  That sounded great to me!  He then listened to her heart and heard something a little off.  A murmur or something.  So he wanted her to get a heart ultrasound.  I thought "okay, he's just doing this to be safe..."

We only had to wait 45 minutes for the ultrasound, which is pretty amazing.  The ultrasound tech said that it would take between 30-40 minutes to complete.  Haven had to lay still the whole time and got to watch a movie.  I stared back and forth between the screen showing Haven's heart, the movie and the clock the whole time.  30 min went by, 40 min, 50 min and then she said that she had to go talk to the doctor reading the results to see if he wanted more pictures.  I instantly knew something was off.  The doctor himself then came in and took more ultrasound pics for another 10-15 minutes.

We were then brought back into a room to hear the ultrasound results.  When the cardiologist walked in with a pencil and a blank piece of paper, my heart sank.  My mind was racing 200 mph thinking "what does he need to write down?  Why would he have to draw something?  Why is he sitting between us (Jason and I)?"

Then he says "Okay, I'm going to draw a picture of what is going on."  He drew the 4 chambers of the heart and explained that Haven has a hole in between the top 2 chambers, which is causing the right side of her heart to work much harder than the left side.  It's not really a problem when she's sitting around doing nothing, but when she is more active, her heart has to work even harder to pump the blood around and this causes her to get fatigued easily.  He then said we had 2 options to fix it or she'd never be able to play sports or have children of her own and there would be more complications down the line.  Option 1 is put a device in her heart to seal the hole.  Option 2 is open heart surgery.  It was then that I couldn't stop crying.  Seriously, THOSE are my 2 options?!  Wow, I was in so much shock!

Option 1 is our best bet, it's the least invasive.  He showed us the device and how it works.  They will go up through a vein in her leg and into her heart.  The metal/meshy looking circle piece goes through the hole, opens up and then they come back through the hole and another piece closes the other part up.  It looks like this, and the hole in her heart would be in the middle.

Then over the next several months, tissue will build up over the device, sealing up the hole and she'll be good as new and never need additional procedures or have any problems (hopefully).  The problem is, they can't be entirely sure that Haven's hole can be fixed with this kind of device.  He said with her, there is an 80% chance it'll work and a 20% chance it won't and that she'll need open heart surgery instead.  Then he said he'd like this done this summer around July.  He doesn't want to wait too long and he wants to wait until she's a "little bigger" before it's done.

We have a follow up appointment in May, which they will repeat some of the same tests that she had, I believe.  Then sometime in July we will arrive at the hospital early in the morning, Haven will have to be put under.  She will then have an esophagus ultrasound (down her throat) to get an even better look at her heart.  If it looks like the device will probably work, we'll continue on with that procedure.  If not, she'll have the surgery instead.  (Even if she gets the procedure, there's still a chance that it won't work once they get inside of her and she'll need the surgery still anyway.)  Then she will stay overnight for monitoring and will have to take it easy for 4 weeks with follow up exams, etc.

So, that is where we are at!  We need to watch and make sure she doesn't get overexerted (though she IS allowed to play soccer, baseball, and dance still).  She just needs to be able to rest when she's tired.  We also have to be careful if she gets any illnesses since she is more susceptible to pneumonia than the average child (which she has already had last year).

The cardiologist we saw does about 25 of these procedures each year and has done over 300 in all.  He listed off several cases where something didn't go right and almost all of those were when he was first starting out doing them.  I am still very nervous about the whole thing.  I know Haven will do great and I know that she's in great hands at one of the best hospitals around, but obviously any time you deal with the heart it's kind of a big deal!  All day yesterday I was shaking so bad I could hardly walk and my hands were shaking so badly I could hardly eat or type.

BUT if Haven is so great now (and she is!), then I can just imagine how fantastic she'll be at 100% functioning!

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