Surgery Day 12-7-2016 Update #7

We're home!  Kimber ate and drank everything in sight happily.  Nothing held her back from leaving.  They came and did an EKG around 3:00.  The second the machine turned on I knew it was different, I have never, ever seen an EKG like it from Kimber.  It.Was.Perfect.  I cried, and asked for my own copy, the girl didn't understand at first, she kept saying "it's Ok!  It looks really, really good!" I explained that I knew that and that was why I was crying, I was just unbelievably happy.  We were released soon after that.
The next 2 days kimber has to take it easy, nothing over exerting.  Then for another 3 days she just has to refrain from sports and exercise (aka riding bikes, climbing, running).  None of this is for her heart, her heart is absolutely fine, it's just for her incision sites.
We see Dr. P for follow up in 8 weeks then he won't see us for a year, after that if she's doing well he's done with her!

Kimber came home to a Get Well card that her kindergarten class made and sent home with Big Brother.  It was so sweet and she was so excited.

Here are some fun pics from today.  Including the wonderful, perfect EKG.

Surgery Day 12-7-2016 Update #6

Kimber is doing really well.  She downed a slushy in less than 30 min and begged for more, she has been cleared for food and requested Ramen Noodles but the nurse won't let her have those while laying completely flat so she had to settle for Mac and Cheese, I hope she eats it better for them than she does at home.

She's on flat bed rest for another 3.5 hours, they'll do an EKG to check on things around 3 and then we should be going home around 4.  She's a fighter, and very stubborn, she wants to sit up so bad, we've had to forcefully lay her back down a few times.  The worry is bleeding too much from the entrance sites but luckily for her Dr. P was able to just use her veins and didn't need an artery to get to her pathways so the risk of bleeding is a bit less than it would have been.

Right now she is watching one of her favorite movies, The Hobbit, yes it's a love of hers, her bonding thing with Daddy, she is happy as can be at the moment.

Surgery Day 12-7-2016 Update #5

A little groggy and quite stubborn but she's drinking a lot already and asking for food, which is great!  She has to lie flat for 5 hours...less than 1 hour in and she's already fighting it, ugh.  But once we're out of PACU and on the floor we will pull out fingernail polish and make her very happy.

Surgery Day 12-7-2016 Update #4

She's done!  3 hours.  She for sure has PJRT, was very easy to go in and out of SVT and the SVT stopped immediately upon freezing the area, he froze 5 points, they are the blue spots on the picture below, which is an image of the right side of kimber's heart.  It's not likely the svt will come back, it's meant to be a permanent fix and if not we will know within a few short weeks.

We are now waiting for her to wake up in PACU and then we'll get to see her.  We will be here another 5 hours keeping her still to prevent bleeding.

Surgery Day 12-7-2016 Update #3

The nurse just called.  Kimber has been a sweetheart, cuddled the nurses and teased with them until she was put under and she said she went to sleep like a dream, the perfect patient.
They're still mapping her heart but as of right now she went right into SVT immediately and since has been in and out of SVT very quickly, which is a very good thing because without SVT the surgery can't happen.
Before surgery Dr. P explained that it's best for the pathway(s) to be all on the right side of the heart rather than the left and that he was hoping to freeze the pathway(s) rather than burn.  The nurse just reported that so far it seems all is indeed on the right side and he should be able to use the freeze method.
So far, so good!

Surgery Day 12-7-2016 Update #2

They just took my heart away.  It's so hard letting them carry your child off.
Projected time is 4 hours give or take. They'll call us with an update ever hour.
Dr. P is wonderful, he has watched our little girl grow from a newborn and treats her like his own little princess, I'm sure he'll take very good care of her.
They'll go into the right side if the heart first and hope the pathway(s) is there, if not they'll check the left, which is more difficult but doable.  He's hoping to freeze the pathway(s) but burning is also possible.  In about an hour they will be all prepped and done with the first step, an EP study that will hopefully show them where they need to be, then they should give us an update letting us know what they have found before they begin.
We're feeling your love and prayers, thank you :).

Surgery Day 12-7-2016 Update #1

Surgery is scheduled for 7:30am.  We were instructed to be here by 5:45am...not nice.  It's just over an hour drive so we had to get up at 4:00am.
Kimber woke up happy and excited.
It is now 6:15 and we're all registered, kimber and daddy are having a blast on Snap Chat, she is quite slap happy and full of energy.
We're being admitted right now.


Cardiac (Catheter) Ablation

Well, we took the plunge and scheduled the ablation for the end of this year.

Shortly after the last update we started seeing high heart rates on Kimber's FitBit.  And then 3 times she told me "Feel my heart, it's bumping", all 3 times she was in SVT.  I'm not sure if she has been having episodes all along without us knowing or if this was a new thing, in the past many, many times Kimber came to me and asked me to feel her heart because it was "Bumping" but when I'd listen it was in normal rhythm so I thought she was just becoming aware of her heart beat, I mean surely she couldn't be having SVT because this kid had never, ever converted out of an episode on her own before so why would she now?  I'm second guessing that thinking now, I'm pretty sure she's been having episodes for at least the last 2 years but was converting pretty quickly, obviously before I listened to her heart.  The last 3 episodes that we, and the FitBit caught, were short, 5-15 minutes long, and she self converted without any vagal maneuvers, twice we were listening to her heart and heard it convert on its own.  The self conversion is amazing news!  But knowing this now brings new light to Kimber's claims that her heart was beating too fast in the past, all this time we've thought she was SVT free when she really wasn't.  Having so many episodes suddenly happening so frequently we called the EP who upped her medication doses for the first time in 4 years and pleaded with us to reconsider ablation sooner rather than later.  After much thought and prayer we decided now is the time so I called and got her scheduled for December 7, 2016.

Here is a screen shot of the FitBit app showing one of Kimber's spikes to SVT:

And since then we've been waiting.  Last night was the very last dose of heart medications for Kimber, after 5.5 years of heart medications Kimber is hopefully done forever.  Now, I say "hopefully" because:
a) the ablation could be unsuccessful and she could end up right back on the medications soon after.
b) even if the ablation is successful the SVT could come back later in life, most likely around puberty when hormones and the body starts to change.

We opted to slowly wean Kimber off the medications rather than suddenly stopping them, the EP didn't say which to do and the Pharmacist said it was up to us so we decided the slow wean was probably best since we'd heart stories of terrible withdraw issues in other kids who stopped suddenly.  I tell you what, the last week has been so, so hard on all of us!  Remember Kimber has been on these medications for years, since just a week old, it's all her body knows, so when we started lowering the doses her hormones and her body started to resist, it wasn't happy about it, and essentially didn't know what to do without the medications.  Kimber has had terrible mood swings, yes she's a 5 year old girl and they're pretty moody by nature, but this was worse and came on quite suddenly.  She has been terribly emotional, clingy, and had a hard time being separated from us.  One day I had to carry her kicking and screaming onto the bus and had to pry a monkey grip of a Kimber off of me forcefully, plop her down in a bus seat, and the driver and I had to have an older girl sit next to her and block her in so she wouldn't leave the seat and come after me, the bus left with a screaming little girl and left me crying on the side of the road.  Luckily the driver reported later that afternoon that Kimber stopped crying very soon after leaving the bus stop and giggled and had fun most of the ride to school.  This week as I walked Kimber to dance class she suddenly wrapped herself around my legs and begged me to carry her, I obliged only to have her monkey grip me again and refuse to leave my arms once in the dance room, a lot of coaxing, pulling and prying, and I was again leaving a screaming Kimber in someone else's care.  I won't mention the long days at home, let's just say it has been rough.  None of this is typical Kimber behavior and all suddenly started just a few days after we started weaning her off medications.  Hopefully it is short lived and we have our happy girl back soon!

It was bittersweet giving that last dose!  And funny enough this morning as Kimber left her bedroom I called her back, presumably to give her medications, I stopped for a beat as she walked into her room and asked "what mom?" and I smiled and said "nothing baby girl, just go get dressed".  It's so routine that I know it's going to take months, or more, to remember we don't do it anymore.

Here is a picture collage commemorating the last dose, I couldn't help it, we needed to document it as it's such an epic milestone.
I will keep this blog updated, this will be my communication to keep everyone in the loop on surgery day so check back here often on December 7-8th to keep yourself updated on Kimber's progress.

Prayers that they can successfully get Kimber to go into SVT in order to accomplish the surgery, that they will be able to ablate it all successfully, that Kimber will handle the surgery well and come out OK, that we can avoid any and all complications, and that recovery will go smoothly and quickly for her, would be greatly appreciated.  Oh, and maybe a little prayer for Mommy and Daddy as well ;).