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.


7 Months SVT Free with a Twist...

Yahooo!!! We have made it to 7 months SVT free!  Such a great feeling!  And she even experienced a 3-4 day stretch of high fever (ranging from 102-104 degrees) with no other symptoms and made it through SVT free :).

On a bad note:

Miss K suddenly started having some off days a few weeks ago, she is a very active child full of mischeif on any normal day but a few weeks back she started having days here and there where she's listless, extra tired, begging to be held and snuggled, and has a huge lack of energy.  I'm used to a little girl who never sits still, but lately she has had a lot of days of curling up on the couch with her blanket and begging for a movie, her eyes say a lot about how she feels and during these times of listlessness her eyes say she feels off in some way.

I always pull out the stethoscope and my phone (with my Cardiograph app on it) and check her heart rate during these down times, my first thought when this all started was that she was experiencing SVT, I was quite wrong.  Usually during these odd moments her heart rate was below her normal range but not in a bad way, I just thought it was slow because she hadn't been active, that is until a week ago when I checked her heart rate to find her beating in the mid to low 50's.  Anything below 80 worries me with her, and until now she's never really dipped below the mid 90's, so 50's was scary.  I called the Cardiology nurse and asked her how low of a heart rate was too low, I let her know Miss K was in the mid to low 50's at the moment and I was a bit concerned.  She didn't seem too concerned herself though, which calmed me quite a bit, my main reason for calling was to ask Miss K's EP Cardiologist if he thought I should bring her in to see him at the 6 month mark or if he thought she was fine and we could wait a whole year like I had origionally planned.  The nurse was baffled by this question, I guess the charts in front of her showed Dr. P still wanted to see her every 2 months and I was 2 months late on fulfilling that request (I'm almost positive she was looking at Miss K's 2011 charts rather than 2012 and 13 charts), she refused to believe me when I told her we were on a 6 month schedule now and that I was given the OK to wait a year if I felt good about it.  I ended up hanging up with her strict instructions to call scheduling and get Miss K in for an appointment NOW.  I then called scheduling and told them Miss K needed to see Dr. P ASAP, they looked at her charts before bringing up the calendar and then the confusion began.  In their notes Dr. P had asked that we come in every 6 months, just like I told the nurse, they didn't want to schedule Miss K to come in until September.  I told them the nurse asked that we be seen ASAP so they told me they would call Dr. P themselves and ask him what he perferred we do.  I waited all afternoon and into the next morning to hear back from them, instead of scheduling calling me back I got a personal phone call from Dr. P himself.  This always worries me, Dr. P only calls me personally when there is something concerning he needs to talk with me about (except when we have lab work done and he's reporting the results, which he always does personally).  He was a bit concerned about the low heart rate, though he was speaking with me directly because he wanted to know when the last time we refilled her medications was, he wondered if we had been issued a bad bottle of Digoxin.  This was a good possibility since her listless moments started soon after we refilled her medications last.  He ruled out Digoxin toxicity over the phone when he read her chart and realized she has been on the same dose since last October, but he wanted to be 100% sure this was not the case so he asked me to bring her in for an EKG the next day as he was worried that she may be having some Bradycardic spells.  And knowing children like he does he told me he'd order a Holter Monitor to send us home with because EKG's only show what's going on at that moment and if the child is healthy and fine, or throwing a tantrum, we won't see what the issue is in other situations.

Somehow this was the perfect time to be requested to head down to PCMC.  We were already headed down there the next day to bring Baby Brother in for his first Urology visit (more on that below) thus making it easy for us to leave just an hour earlier and pop in at the Cardiology clinic for a quick visit with Dr. P.  Miss K just happened to be having one of her off days on this day, a good thing for Dr. P to see.  Things went downhill the minute we entered the clinic though (not in a bad medical way I assure you).  Miss K was terrified of the room, terrified of the exam table, terrified of the nurse, and even more terrified of the EKG machine and its "stickers" and wires.  When we laid her on the table she started screaming, the nurse had quite the struggle getting the stickers placed on her chest and belly as Miss K kicked and screamed through it.  We tried everything from snuggling her to encouraging her to touch and hold a sticker herself to putting EKG stickers on her baby doll (this only resulted in more terrified screams as she was afraid of what the stickers would do to her baby).  Finally the nurse decided she was part of the problem and she left the room for a minute, apparently this wasn't a big enough part of the issue as Miss K continued to scream and kick and still refused to calm down enough for us to get a good reading.  The nurse came back with a stuffed lamb and a sucker in hopes of calming Miss K down with bribery, it didn't work she refused both very adamantly.  I offered her snacks from the diaper bag but was also turned down, and she screamed harder when we got the bubbles out and blew a few for her.  We finally gave up and took what we could get, her heart rate was ranging from 120's to 140's during this tantrum.  Dr. P came in soon after the nurse printed a reading from the EKG machine and assured us he could not see any sign of Digoxin toxicity.  He felt she is probably fine and that maybe I was off with my counting of her heart rate or it was just some fluke that was nothing to worry about, he admitted though that maybe she has outgrown the PJRT just enough (but not completely) to maybe not need so much medication so we talked about lowering her dose on one or both the Propanolol and Digoxin after further evaluation.  But to ease my mind and to really be sure himself he still sent us home with a Holter Monitor fitted to Miss K.  She was not happy about that machine either, she screamed and kicked right out of my arms while the nurse was trying to get it all set up.  Somehow she forgot about it very quickly though and amazingly never really touched it through the 24 hours she had to wear it.

I sent the Holter Monitor back yesterday.  I have no idea how soon we'll hear from Dr. P with the results, Tomorrow is our state holiday (Pioneer Day) so unless UPS gets the packaged delivered today and Dr. P somehow gets a chance to read it today I will most likely not hear back from him until Thursday or Friday, this poses as a sort of problem though because we will be out of town camping up a canyon and won't have cell phone service so all I can do is hope he calls today or doesn't call us until next Monday.  I will keep you all updated with the results.

I promised an explanation about Baby Brother seeing Urology:

I mentioned in previous posts about Baby Brother being born with Hypospadias.  Our Pediatrician told us not to pursue it until he was nearly a year old because PCMC wouldn't let anyone do any surgery on a child younger than 12 months (unless it's life saving, of course).  I decided to go against him and called and made an appointment with Urology months ago, I knew it would be a long wait to get in and figured we should get the ball rolling now rather than later.  This past Friday was our clinic visit to see what the Urologist had to say about the matter.  We absolutely loved the guy, he was old and funny and full of information.  Turns out he much prefers to do the surgery at around 6 months old, and it's a mild, non invasive surgery so PCMC lets him do so.  We barely spoke with him 10 minutes when he was ushering us to his surgery nurse to schedule Baby Brother for his very first (and hopefully last) surgery.  He will be going in to have his Hypospadias corrected on September 6th.  To say I'm nervous would be an understatement.  I'm terrified of handing my baby over to be put under anesthesia and cut on.  The next 6 weeks are going to be nerve wracking for me, I'm going to have to try to stay busy to keep from thinking about it.