A New Routine

Miss K is finally cutting teeth :o).  And since her first tooth tried to come through it came to my attention that it is now time to start thinking about taking care of those precious teeth.  I found out how bad compound medications are for teeth :o(, and to top it off Miss K needs flavoring in her Amiodarone, said flavoring is actually just regular snow cone syrup, packed FULL of sugar :o(.  We're giving Miss K a double whamy so to speak, her teeth are doomed :o(.  So we've added a new step to our routine.  Immediately after administering any of her medications we are now brushing her gums with a baby tooth and gum cleanser kit.  Luckily Miss k likes it, she thinks it's funny :o).

At her 6 month Well Baby check up her pediatrician prescribed vitamins with fluoride in them, he did the same for my son when he was 6 months, it's something our pediatrician likes to do for breastfed babies to makes sure they're getting what they need.  We're going to be VERY diligent getting Miss K to take her vitamins however we can so that she can get the Fluoride to keep her teeth strong.

Here's to hoping we can protect her little teeth from rotting out of her gums because of the Amiodarone and flavoring!


A Visit with an Ophthalmologist

The eye center Miss K's Cardiologist referred her to couldn't get her in until April, her cardiologist wanted her seen ASAP.  I made the decision to get the name of a Pediatric Ophthalmologist from Miss K's Pediatrician instead, hoping they could get her in sooner, and was in luck, they were able to get her in within the week.  Today was the day.

I was a little nervous about seeing this Eye Doctor, I had no idea if he would know anything about the medication Amiodarone, or if he would know what he was even looking for.

Now that the appointment has come and gone I'm still not sure the Doctor knew what he was looking for, he knew quite a bit about Amiodarone surprisingly.  The appointment only took an hour, that was including waiting 30 minutes for Miss K's eyes to dilate, this seemed odd to me since the eye center her Cardiologist recommended said Miss K's appointment would take 2-5 hours???  The Eye Doctor took a few minutes to look at Miss K and then told me he didn't understand why I was there, he said she was too young for us to know anything about any side effects showing in her eyes and that he didn't think there was anything to worry about with her.  He then asked if I had any personal reason to have her seen by him, of course my only reason was because her cardiologist wanted her seen ASAP.  So this Eye Doctor's plan is to look up Miss K's Amiodarone ratios (her dose to weight ratio and the milligrams to milliliters ratio of her compound mix) and see what the clinical outcomes say about the possible side effects in the eyes, he said if there was anything relevant to Miss K's situation that he'd call me, otherwise she's fine.

Now I'm trying to decide if we can cancel Miss K's scheduled appointment in April with the other eye center or if I should keep it for a second, possibly more informed, opinion.  I'm not quite sure what to do...I really feel that Miss K's eyes are just fine, but I want to make sure my feelings are correct and today's eye doctor didn't really help me out here.


And Yet Another SVT Episode :o(

Miss K had a bad afternoon yesterday.  It started at about 1pm after her morning nap, she woke up smiling but it didn't last long.  She was fussy and hard to make happy until her afternoon nap, I thought she was just tired and would sleep her usual 3 hours to wake up happy for the evening but I was SO wrong :o(.  Miss K only slept 30 minutes and woke up screaming, I rocked her and bounced her and tried everything I could think of to get her back to sleep, she got her self really worked up, I checked her heart rate constantly throughout this spurt of crankiness and was happy to hear it beating at a good steady, slow pace of about 120 BPM like normal the whole time.  After almost an hour of rocking and bouncing she finally calmed down and fell into a very light sleep.  I spent the next hour keeping her big brother VERY quiet so as not to wake the screaming, cranky girl again.  When her Daddy got home she woke up immediately and wasn't happy about it, no matter how quiet my husband is the kids just know he's home and asleep or not they want to be with him.  Miss K spent the rest of the evening being crabby and fussy.  At bedtime I was trying to make her happy so she wouldn't keep her brother up, I noticed her heart seemed to be beating out of her chest under my hand so I grabbed the stethoscope for about the hundredth time yesterday and sure enough it was racing.  I am happy to say that it wasn't beating so fast we couldn't count it and I was able to keep count for a whole minute, I came up with about 192 BPM.  It was hard to know exactly what to do for her, we've never been through an episode like this before.  Miss K was fine, just fussy and acting like she didn't feel well and her heart wasn't in "true SVT" as her Cardiologist would say.  True SVT is a heart rate over 210 BPM.  So her Daddy and I just decided to ride it out and see what happened, we listened to her heart about every 2-3 minutes to make sure it didn't beat any faster.  At 10pm we were able to give her her Propanolol and then I could feed her for the night, while eating Miss K finally relaxed completely and soon after that her heart rate slowed to it's normal 120's and she fell asleep.  It was a stressful moment for us, we knew she was fine but the whole not knowing if she would stay below 200 BPM or if she was inevitably going to race above 200 BPM and pass out like her first episode of this year was nerve racking.  I'll be logging this episode in her little log book and hope and pray she doesn't have any more or worse episodes.  Any "true SVT" episodes that end up being scary will inevitably mean a medication adjustment, most likely upping her Amiodarone, which is something we DO NOT wish to do if we can avoid it.


Home 2-7-2012 Miss K is 6 Months Old!

Miss K had her 6 month Cardiology check up today.  It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say:  I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?

Anyway, on to today's results and decisions!

Miss K is doing great heart wise.  Her little heart was beating at 128 BPM today at her appointment, which is great :o).  My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).

We decided to keep her on the Amiodarone a little longer.  As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to.  So essentially it was my decision to keep her on it.  Those 2 SVT episodes last month really scared me into it.  But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY!  We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is.  I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes.  If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it.  As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.

Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist  to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).

All my concerns were considered.  Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.

Miss K CAN take Tylenol, thank heavens!  Now I can feel good about making her ear pain go away orally!  The numbing ear drops do work but I feel Tylenol would work better.

Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine.  I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).

I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow.  Hopefully this is nothing to be concerned about but we'll see!

I asked about antibiotic interactions with her heart medications.  The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol!  But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.

I asked about her Thrush issues.  This is something we've been battling with her for about 4 months now, it comes and goes.  We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again.  As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(.  She should outgrow it in time.  I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.

I asked about our method of giving Miss K her Propanolol.  She LOVES to spit this one out and refuses to swallow it.  One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason.  I was only concerned that there may be an ingredient that could interact with her heart medications.  The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!

My last, and biggest, concern was her Potassium levelsIn the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having.  They put her on Keppra just in case and asked that we have an MRI done a few months later.  When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system.  Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention.  It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off.  I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about.  When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work. 

Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).


Congenital Heart Defects (CHD) Awareness

Ok Pinterest Pinners, its Heart month, my family is particularly focusing on Childhood Heart Defects, there is an AWESOME Pinterest page for CHD Awareness that Miss K has been added to! Go to http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/ and PLEASE PLEASE PLEASE re-pin the stories that especially touch you! And PLEASE PLEASE PLEASE re-pin Miss K's story! It's there, scroll down till you find it! Help spread awareness! Most of you are probably like me, I didn't know CHD was as common as it is until I had a CHD baby myself, let's end that problem!