Miss K had her first appointment with her Electro Physiologist Yesterday. He told me Miss K has PJRT: Permanent (or persistent) junctional reciprocating tachycardia, a type of SVT that's harder to treat :o(. She's now wearing a Holter Monitor until this afternoon. The Doctor wasn't happy about how often she's still going into SVT but is OK with it because we can get her out of it as long as she's not staying in it for more than a few minutes.
The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.
The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.
There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.
Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!
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