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.
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 ;).
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