6 Month Check Up

Miss K saw Cardiology today. Getting an EKG wasn't as bad as last time, I was way more prepared for her reaction lol, I took her favorite blanket and beloved "Bow" the elephant in with us to help calm her and this times nurse let me hold her while we put the "stickers" on, hooked her all up and even let me keep holding her through the EKG (the last nurse swore it would mess with the reading and wouldn't let me hold her), we wrapped her in her blanket and put stickers on "Bow" and she calmed right down for the whole reading, got a somewhat normal heart rate for her EP Cardiologist to look at . Since we just saw him a month ago for her Bradycardia scare today wasn't really necessary but he failed to mention that until he realized who he was seeing lol, he felt bad for having us come in but I was happy to do it since last time was a fly by just for an EKG reading we didn't get to really talk with him, this time I took as much of his time as I could and we really talked .

Miss K is doing great according to her EP Cardiologist.  He feels that since she hasn't had any known SVT since December that she may very well have outgrown her PJRT! But he also doesn't want to push our luck and is going to keep her on her Digoxin and Propanolol until she's 3 years before trying any lowering of doses or stopping all together just in case she isn't having SVT solely because of lack of weight gain, we will see if this is the case in a year IF she isn't like her big brother and instead gains some more weight in the next year lol. Her murmur that we just found in March is still there but he says it's not a hole, it's just a different sound in her heart and over 80% people have this different sound and he's sure it's harmless because all her past Echo's have shown a perfect structure and no defect.
Some readers tend to take news like this out of perspective.  That last paragraph does not mean Miss K is now "OK", it by far does not mean that she HAS outgrown her PJRT nor does it mean we are out of the danger zone at all.  SVT free for over 1 year can still just mean her medications are working, a lot of kids who go that long have been taken off of their medications and have had severe SVT resulting within days or weeks of the medications leaving their systems.  Miss K has only gone 8 months SVT free, we MUST take into consideration that she has barely gained just 1 pound since last October when we started the Digoxin and adjusted her Propanolol dose.  There is a very great chance that she has been SVT free this long only because she has not gained much weight.  I am completely OK with following the EP Cardiologists recommendation to keep Miss K on both medications at their current doses until she is 3, it seems a bit reckless to start weaning off of either medication right now, we need to be careful with this process and take it slowly and one step at a time.  We also need to remember that PJRT is not a temporary condition, even if a child is considered to have outgrown it it has a very high potential of presenting itself again later in teen years or as an adult.  This is a serious heart condition that is NOT going to just go away forever, we can always hope that it will but we MUST remember that it is very unlikely.

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