We visited with Miss K's EP Cardiologist yesterday for her regular 6 month check up. It actually went really well! Miss K didn't cry, she was a bit cranky from a long day and not much of a nap to speak of, but otherwise fairly cooperative. She let us do the EKG without a fuss and it read normal for her as always. Our Cardiologist was impressed with her, he could still hear her murmur we found last year but still is not concerned about it. He also said she has not gained enough weight for a medication adjustment, he's not surprised with her lack of gain and advised me that between now and age 5 she likely won't gain more than 4-5 pounds, if she even gains at all, for the most part this slow weight gain is normal for the age, Miss K is just unique in that she's so tiny to begin with. She is barely tipping the scales at 23 pounds even, she's about 34 1/2 inches tall. While I, and others, are hoping for a good weight gain from her in the next 6 months to a year her Cardiologist is content having her stay in this weight area to avid medication adjustments lol, it's kind of a "rock and a hard spot" sort of thing, we want her to grow and gain weight like she should but we don't want to have to give her more medications.
I asked about Miss K's little episode a few weeks ago, (here), he was concerned about the symptoms BUT he swears they are not cardiac related in any way. He said from a Cardiology standpoint there is nothing related to the heart or it's function that would cause very slow heart rate, very low body temperature and profuse sweating all together like Miss K was that day. He assured me without a doubt that her symptoms were not the result of an SVT episode, he's never known, read about, or heard of an SVT episode causing these symptoms all together, even the most severe episodes. He speculated that a medication overdose of either of her medications could possibly cause this reaction BUT Daddy and I are 100%, without any doubt at all, sure that we did not overdose her medications the night before, nor did we issue them too early (to close to her last dose). He said the only thing he knows of that causes these symptoms all together is the "D" word, a word he didn't want to even mention, I'm sure most anyone can figure out what word that is. It scared me. It has him worried. But it's nothing he can diagnose, he can't even refer us to someone who can diagnose it because he's never heard of it happening except in the case of the "D" word. We're back to square one figuring that day out. I don't know if I want to just leave it be and wait for it to happen again or if I want to further investigate, I don't even know where to begin to look for information about it.
Otherwise, Miss K looks and sounds great for her "normal" from a Cardiology stand point. We're to see if we can go a whole 6 months without needing a visit, if she doesn't gain weight in the next 6 months then we are to wait a year to see him, he doesn't see any reason to see her unless she gains or is having frequent SVT. We continue to give her 3.2mL Propranolol 3 times a day and 1.2mL Digoxin twice a day.
Before our appointment we had the opportunity to meet and play with one of Miss K's heart sisters, Brielle! It is such a blessing to know other kiddos with PJRT but an even bigger blessing to know one that lives close enough to meet and plan dates with! This was our first time we both were available and I was driving up their direction anyway for our Cardiology appointment so we decided to take advantage. We met up at Utah's Thanksgiving Pointe and explored the Dinosaur Museum together. It was so much fun and so great to get the girls together. Brielle is such an adorable little girl and her mama is a real sweetheart, I love how much we have in common. I hope we get to see each other more often!