18 Month Well Exam

Miss K had her 18 month well child check-up on February 15, yes that was about 2 weeks ago and I am very late updating about it lol.  Having a newborn plus 2 kids under age 4 has been crazy busy around here!

Miss K is weighing in at a tiny 18 pounds even and is just over 36 inches tall.  She may not weigh much but she sure looks pudgy!  She has rolls and dimples that Big Brother never had lol.  The Pediatrician was impressed with her, he's not a bit concerned with her weight, she's as healthy as can be (aside from her PJRT) and he doesn't feel there's any problem as of right now.  Everything else checked out perfectly.  And speaking of that little heart, thus far we have made it 2 months SVT free **Knock on wood** (lol).  She's had missed or 1/2 doses of her Propanolol a few times due to spitting it out for some odd reason, she's usually really great about swallowing it but on some rare occasions she will dribble it down her chin loosing some or all of the dose.  But these missed doses have not caused SVT (yay!).  She has also had crying fits with breath holding that we were sure would cause an episode but, thankfully, they have not yet.  And she loves to throw major tantrums, she kicks, screams, holds her breath, and throws herself down on the floor slamming her head down with all her body weight (thus making the tantrum worse because then she is also injured and screaming harder from that, go figure!), these tantrums always make us nervous as she gets herself so worked up her heart is racing and she is flushed from the exertion but her little heart keeps a normal rhythm never going much over 120 BPM during these fits.

Miss K has been on the same dosage of her medications since October 2012, nearly 6 months of no medication adjustments is so good for her!  But we have to keep in mind that she hasn't gained significant weight since the last medication adjustment so that's most likely the biggest factor in not needing more of one or the other.  So as of right now Miss K is taking 3mL Propanolol 3 times daily and 1.2mL Digoxin twice daily.

Miss K's next Cardiology appointment is in 1 week, March 12.  I'm excited to hear how the EP Cardiologist feels she is doing.  I am tempted to ask for a Holter monitor to see if she is having episodes we don't know about, I swear there have been a few times I have checked her heart with my hand or ear and it was surely in SVT but within the time it takes to grab a stethoscope her heart rate has changed and I have found that it is beating normal and fine, I really wonder if she is having episodes we don't catch and is converting out of them on her own, this would be a huge miracle for her since she has never in her 18 months of life converted out of SVT without a Physical Maneuver.  But I hope I am very wrong, all I ever hope for is for her to truly be SVT free and eventually outgrow her PJRT!

Somehow we have been able to all stay healthy since our bout of the Flu back in December, again **knock on wood**!  I hope we can all keep up this good health, it's nearly spring so flu and cold season should be coming to an end real soon.  With a newborn in the house I have been extra cautious, I am determined to keep him healthy!  RSV has been so bad this year I constantly fear any illness coming into our home and putting Little D in the hospital.  I am so grateful we are almost past that time of year.

I will be back with another Miss K update sometime next week, I'm sure it will be all great news from the EP Cardiologist :o).

Any Thoughts? Advice? Suggestions?

I'm not sure if this is heart related or not so I thought I'd throw it out there and see if anyone else has noticed the same thing with their heart babies.  Miss K is well known for holding her breath a lot, not when crying or any time she's upset and not to the point of passing out (I know a lot of healthy children who do this and know it's quite common), she just does it while playing or jabbering most often when blowing raspberries or spitting at us she'll just keep blowing and blowing to the point that we would normally need to take a breath and start over again, we've counted and she usually doesn't stop to take a breath for over 15 seconds.  It doesn't seem to bother her in any way.  She is also known for doing it while breastfeeding, it's like she forgets to take a breath or forgets what she's doing and she'll suddenly start choking and gasping for air, this is something that was at it's worst when she was just a few months old now that she's 7 months she's been doing it less and it's not as dramatic or traumatizing but still worrisome for me.

About a week ago I went to PCMC to refill Miss K's Amiodarone and we found that she only had a 10 day amount left on her prescription allowance but she had about 28 days before her next Cardiology appointment, it was a simple, and commonly made, miscalculation on the Cardiologits part when he first prescribed it back in September, we should have been able to get 30 day refills each time we went in until at least the end of April but he was short just a month.  The pharmacy sent him a fax so he could prescribe it again but it was going to take a few days for him to get the fax and send in the prescription order and then the pharmacy needs 24 hours to mix the Amiodarone.  I wasn't happy to hear this since we are 40 minutes away from PCMC and they are the closest pharmacy that is capable of mixing compound medications, I had made a special trip to fill it and I wasn't looking forward to making the trip again in a mere 10 days.  I called Miss K's Cardiologist on my way home and asked what he thought, if maybe since he might be taking her off the Amiodarone at her next appointment we could just not refill it when it ran out and see how she does until the appointment date, I was kind of surprised to hear him tell me "no, she needs to stay on the Amiodarone until I see her".  So we planned to go back in 10 days to refill again for a 30 day amount.  Luckily we are a little ahead of ourselves on refill time with both the Amiodarone and the Propanolol, so instead of us having just 10 days or so before needing to go back we ended up with 18 days worth of Amiodarone left, so now I'm stuck with a tough decision.  Miss K now has 9 days left of Amiodarone, her next Cardiology appointment is in 20 days, that leaves us with 11 days.  The Amiodarone is kind of expensive to fill, especially on our already stretched budget, I really don't want to pay for a 30 day refill with only 11 days before her Cardiology appointment and have him take her off of it thus wasting that expensive stuff, but there's still the chance he may keep her on it for another few months. I guess I'm asking for suggestions or advice...I can see if the pharmacy will just give us the amount needed to make it to her Cardiology appointment thus saving us a little money and then go back for another refill on appointment day if needed or I can just get the full refill in 9 days and if the Cardiologist takes her off of it keep what's left in case she doesn't do well without it and we need to put her back on it.  It wouldn't be such a tough decision for me if: A) the Amiodarone wasn't so expensive and B) the pharmacy wasn't so far away with a 24 hour notice requirement for compound refills.