Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.
Her weight has caught up with her Propanolol dose finally. Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed. If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.
He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already. He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.
He is not taking her off the Amiodarone as of now. He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own. He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready. He is still wanting to keep her on the Amiodarone until her 1st birthday. He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months. He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal. I'm confident we won't be changing the dose of this medication any time in the near future if at all.
Her heart sounds great, the EKG went very well and her blood pressure is great. Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.
And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine. The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule. I am so relieved! Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us. Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours. And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour. I'm so happy to be able to let her set the schedule now! The Cardiologist's exact words "Oh heavens, please let her sleep! She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o). Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.
We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects. I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out! (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT! I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing) Getting the lab work done was torture on our sweet baby girl. The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks. I admit, I cried too, my tears were almost as big as hers. I felt awful holding her down like that :o(. The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again. We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done. Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(. Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.
Miss K showing off her 2 BandAid covered Owies :o(. I'm sad to say she is getting some scaring on both arms in these locations :o(.
Miss K is doing awesome, she's growing like a weed and changing way too fast. She's adorably funny, cute as a bug and the clown of the house. She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling. Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o). She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.