It Seems I Spoke too Soon :o(.

Miss K had a breakthrough SVT episode this morning :o(.  Her first one in 3 months :o(.  Since January she's been quite good at having an episode once every 3 months, I should have been prepared for it instead of surprised this time.

Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(.  She was VERY congested last year starting a few days after coming home from PCMC, around this same time.  We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment.  No such luck.  Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.

So today the SVT could have been caused by any number of things.  I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason.  I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist.  When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.

I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast.  So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM.  I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate.  It took a mere 5 seconds from finding her in SVT to getting her out of it.  I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not.  I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.

I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up.  I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(.  Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death.  I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage.  It terrifies me.

1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o).  Here's to hoping!

Home 1-3-12 Miss K is Almost 5 Months Old

Just shy of turning 5 months old Miss K is doing quite well!  Still no SVT episodes, YAY!  We're still giving her 1.5 ML Propanolol every 8 hours and 6 ML Amiodarone once daily.

New issues?  I'm not quite sure.  Yesterday I noticed her sweating while eating, something she has done before once or twice since birth, both those times I'm almost sure she has been congested.  She got pretty bad Fall Allergies this past fall season, something she gets from her Mommy no doubt, Fall Allergies get me every year without fail, it was during this period that I first noticed her sweating while eating.  This last time I noticed it she has been congested due to a small Winter Cold, she's not sick per say just "stuffy" with a runny eye.  Definitely no fever or cough and not acting miserable other than difficulty breathing as well as she'd like to.  So, I'm not sure what to do.  I've debated contacting her Cardiologist about it, maybe even her Pediatrician just to ask him if congestion could be the culprit.  My "mommy instincts" tell me she's fine but I'm still paranoid.  I know if it were my perfectly healthy son doing this I would just shrug it off and watch him for a few days/weeks to see if it happened again.  I'll keep you updated on my decision.

Newest "trick":  Miss K has learned how to forcibly spit out her medications.  Yes, that's right FORCIBLY, the past few doses I've ended up "wearing" more of her medication on my face than she has ingested.  I'm not quite sure what to do.  We've tried quite a lot of things to make medication dosing easier and less stressful for both of us but what can I do when she's spitting it back into my face?  We'll be trying yet another method that a cousin of mine suggested:  Try this secret for giving medicine to veteran spitters (be sure you have the medicine within reach and ready to go before you start this procedure): Cradle baby's head in the crook of your arm. With the same hand, encircle baby's cheek and use your middle or index finger to pull out the corner of his mouth, making a pocket in his cheek. With the other hand drop the medicine into this cheek pocket a little at a time. This hold keeps baby's mouth open and his head still. Best of all, the traction on baby's cheek with your finger keeps him from spitting the medicine back out. Maintain the traction until all the medicine has gone down.  Not sure it will work but it's definitely worth a try!


Our next Cardiologist appointment is February 7, 2012.  We're hoping to take Miss K off the Amiodarone completely and have huge success without it.  So I'll update at that time (or if I get any answers about the sweating while feeding before then).