Bradycardic Episodes Update...

We finally got a call from Miss K's EP Cardiologist, it took a few days because of our state holiday and then I was out of town and outside of mobile service so I didn't get to speak with him directly, I just received the message this afternoon.  The Holter Monitor reading came in and he looked through it thoroughly, Miss K does indeed drop her heart rate to the low 50's very occasionally but never for more than a second or so, he said the longest her heart rate was in the 50's was about 1.3 seconds and her average heart rate was 92 BPM.  This is all good, everything he expects to see in a child taking 2 Beta Blockers.

I am relieved to hear that she is OK and no SVT was caught with the monitor either, such a huge relief!

As of right now she is to stay on the same 3.2 mL 3x daily Propanolol and 1.2 mL 2x daily Digoxin.  She will be seeing him in September for a follow up, I am a bit disappointed to be taking her in since I had hoped to stay away from a visit for a year but her EP Cardiologist feels he should see her at the 6 month mark to see how things are going and talk about future medication changes.  He likes to have a game plan and it's time to talk about what we need to do in the future.

On a side note, last week with all the craziness of packing to go on a family camping trip I completely forgot to issue Miss K's afternoon dose of Propanolol Tuesday.  We waited on egg shells the next few days, while camping, expecting an SVT episode because she has always had SVT after skipping a dose, I was terrified of being out in the middle of nowhere with no cell phone service and 30 minutes from the nearest hospital knowing that we had skipped a dose and SVT was possibly inevitable.  We checked her heart rate constantly throughout the week and weekend and were extremely shocked to never catch any SVT!  I am amazed at how far our sweet little girl has come.  She is doing so great and kicking her PJRT in the butt :).

And while camping I noticed at least 1 new molar coming in, this means the cause of her tired moments and off times was most likely teething, I'm so glad to have found a reason for her to have been acting out of sorts!

Our dirty little princess enjoying playing in the dirt while camping this past weekend.

4 Months SVT FREE!

I never thought I would EVER get to say "Miss K has been SVT free for over 4 months".  This is a huge milestone for her!  Her last SVT episode was mid December 2012.  I'd love to say I have relaxed but I'm actually not calm about this at all, I keep waiting for the bomb to drop, it's like we're walking on egg shells and any moment they're all going to smash to dust.  The absolute longest Miss K has ever gone SVT free was 3 months.  We're a month past that and still moving right along.  I really hope I didn't jinx it by telling everyone.  Let's all just **Knock on Wood** just in case.

About a month ago we found an app for checking heart rate.  Daddy just recently upgraded to a smart phone a few months ago and we were eager to see what there was for heart apps.  Amazingly we found a whole bunch of heart rate apps for free.  We downloaded a few and tried them all on Miss K and ourselves to find which one seemed most accurate.  Turns out the best free heart rate app we found is called Cardiograph and it works pretty well if used correctly.  So now whenever we feel we need to check Miss K's heart we pull out one of our phones and get the Cardiograph app going.  Of course she hasn't had any SVT episodes for us to see if it will chart a heart rate that high but that's OK, I'd rather not know at all than have her go into SVT and get to try it out.

Miss K is doing great.  She's been very cranky with her Eye Teeth (or Canine Teeth) slowly coming in.  They're taking their dear sweet time and putting her through a lot of misery, I wish they would just pop through and be done but instead they come in and then swell up and disappear again.  The poor thing is grinding her teeth and chewing on anything soft that she can get her hands on.  She is also refusing to eat a lot of foods, practically living off of yogurt lately, she likes the cold on her teeth and it doesn't take any work to chew it up.

She is potty training as well.  Yes, I do encourage early potty training.  Big Brother started potty training at 21 months, my choice, not his, but he was ready and didn't argue it one bit, by 22 months he was completely potty trained and mostly accident free.  Miss K has a very different personality than Big Brother though so I did not plan to just drop everything and take a week potty training her.  I knew to take my time and let her decide it was time on her own.  At 18 months old she decided that if Big Brother was peeing on the potty she needed to as well, she surprised us by asking to go potty out of the blue one day.  After that first day we pulled out our potty training frog potty and put it in the bathroom Big Brother uses, from then on we encouraged her to use the frog potty any time Big Brother went potty.  Some days she was OK with it and other days she wasn't.  She sat on the potty with her diaper on more than with it off lol.  But at 19 months she started asking to go potty constantly and was actually using the potty every time with minimal accidents in her diaper.  So just after she turned 20 months I put the diapers away and put big girl panties on her, she was thrilled.  Since then she has rarely had more than 1 accident each day, pee accidents that is, she is still having a very hard time pooping on the potty for us but we're just taking it one day at a time.  It's nice to be down to just one in diapers again!  Well, one in diapers full time anyway, of course Miss K is still in a diaper through the night and I'm still putting one on her during nap though most of the time she wakes up dry.

Everyone else is doing great!  We can't wait for summer to grace us with its presence lol.  This Utah mountain weather is really annoying at times.  We've been going through many cold, miserable days with a bit of snow here and there and then suddenly we'll have 2-3 days of 70-75 degrees and sunshine but then after that small tease we're back to the cold, miserable snow days again.  Mother Nature really needs to make up her mind and just stick to one or the other.

SVT

What a bad week we have been having :o(, I hope it gets better after this "hump day" rather than staying the same or, I pray not, worse!

Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard.  He failed to check and make sure it wasn't plugged though.  Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out.  The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice.  So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water.  That's 1 skipped dose.  Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it.  That's 2 skipped doses in one 24 hour period, back to back.  Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened.  I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.

Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician.  She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat.  Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health.  He even said her heart sounded perfect.

Monday night Miss K spent the night playing in her crib, literally all night.  No crying just sweet talking and playing.

Tuesday morning Miss K woke up with a fever, the first fever she has ever had.  It was at 101 F.  I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying.  She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do.  She took an hour nap but woke up with the fever all over again.  Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's.  Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90.  I gave her Tylenol to help with the returned fever and called PCMC.  At this point it was after hours so I had to have the on call Pediatric Cardiologist paged.  I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration.  It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.

Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.

This morning she woke up with a lower fever of about 99 F.  I held off giving her anything for it so that it could burn off whatever illness she may be fighting.  But around 11:00am she started to get fussy again and just wanted to be held.  I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest.  I check her to find that she was in SVT :o(.  It took me almost 5 minutes to get her out of it.  Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in.  An hour later, after constant tears and miserable crying, I found that she was in SVT yet again.  This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT.  I tried our usual Physical Maneuvers with no success.  After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment.  I hate this one.  But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K.  Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version.  We got lucky and it did work, on the first try.  It really upset her though and had her crying so hard she had the hiccups :o(.

After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now.  I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.

The 2 missed doses were very bad timing.  Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes.  We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal.  Poor baby :o(.

**Added Note:

Miss K had 1 more SVT episode before the end of the day.  3 in one day...Wow.  This last episode required the ice treatment again.  It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(.  But it did work.  Miss K ended the day with a much better active heart rate of about 120.

Teething Pain...

And SVT :o(.  This post was meant to come out on Monday (6-18-12) but things have been crazy around here so writing it up is as far as I got lol.

I swear every time we go through teething Miss K has more episodes, she has such a hard time dealing with severe pain and I'm now finding that pain causes her heart rate to go up and if the pain is bad enough it causes SVT :o(.  Tonight we took the kids out to the pool to swim for a bit before bedtime and while we were out I could feel Miss K's heart beating quite fast so I closed my eyes and placed my hand over her heart and sat and "listened" with my hand, it was obvious she was in SVT :o( so I had to tip her back (yes right there in the pool lol!) and blow in her face, it only took one try and she was out of SVT (see Physical Maneuvers).  Apparently she wasn't in it very long (she has a history of being harder to get out of SVT the longer she's in it) and apparently it wasn't a very bad episode as she didn't act much different than her usual self.  But still it was an episode :o(.

I guess we need to prepare ourselves to deal with at least 1 (quite often 2) SVT episode each month from here on out, because that's what she's been averaging since January.  Hopefully the older she gets the less we'll see, with any luck we may get to a point where we'll only see breakthrough SVT when she needs a medication adjustment instead of just randomly without explanation, or in today's case because of some type of discomfort or pain.

Other than teething pain Miss K has been doing wonderfully since our last update :o).  She is finally deciding to crawl, mostly, and loves being able to get around easier than she could rolling.  She is also quite feisty and full of mischief.  When anyone does something she doesn't like she shakes her hands at them, gives a dirty little look, and yells "uh!" it really is quite cute though we hope she doesn't keep the attitude past this cute baby stage ;o).  When eating she is known for pushing our hands and the spoon away from her face and yelling "no!" when she's not up for another bite, another cute attitude from her that we hope doesn't stick.  She's also an adorable flirt and can get any stranger to look her way and comment on how cute that baby is.  She has her Daddy, Big Brother, Grandpa and one of our good buddy's wrapped around her little finger very tightly, all four of them would do just about anything for her.